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Old 03-30-2012, 09:07 AM   #1
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Could I be Gluten Intolerant????

Not wanting to go to the doctor yet again so I thought I would ask here before making appointment. But I have the following things that have been happening and am curious that it may be gluten. I hate to self diagnose but I have been wondering.

Starting around christmas my mouth was feeling very metallic and the inside of my mouth feeling like I had been sucking on a lemon drop constantly. Then the end of January broke out in two places top and bottom inside gums with sores. They were not canker sore but when looking up online at pictures more of like an ulcer. Gum was tender and like a blister but not and then the skin would just peel off and leave open sore gum. Went to doctor and she gave me some oral pcn to take 4 times a day for 7 days. They went away, felt good, then the middle of February started getting that weird feeling again, then first week in March sores appeared again, same spots. called and got on pcn again and they went away. Now last week started to get weird feeling in mouth again. I have tenderness in mouth also. Last couple days feels like my mouth is dry. Doctor said if they come back again that I was suppose to come in.

Last monday night I had a couple beers and battered fish and pizza rolls at a resturaunt and that night about 12:30 woke with terrible stomach pains and then diarrhea. I have not been gluten free at all rest of week. I do have diarrhea/constipation on and off all the time. Been that way for years, either I don't go at all or all the time.

I have always had stomach "issues" and have been tested for ulcer which I had H. pylori and treated and looked at gallbladder which was fine.

I have trouble with joint pain (arthritis) and have been on celebrex on and off. I have tingling in hands and feet and numbness. Which I had surgery two years ago for carpel tunnel.

I am just wondering if I am totally off my rocker thinking it could be gluten.

The main problem for me right now is the mouth ulcers and feeling in mouth.

Man, I sound like I am falling apart!

Any advice or direction would be greatly appreciated. Thanks
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Old 03-30-2012, 11:07 AM   #2
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I'm not a doctor and don't play one on tv, but it certainly could be (all or in part) an effect of gluten issues.

If you aren't looking for a diagnosis of celiac disease to be formally made, the easiest way to test your theory is to get completely off gluten fro a month or two and see if you feel better.
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Old 03-30-2012, 11:48 AM   #3
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MauraV thank you for reply. I was thinking that was what I should try. My daughter went gluten free last year, but ended up being her gallbladder. But now she has been sick again and she thinks its gluten also. Which I have heard that two in a family can be. She was tested last year and it wasn't celiac.

I think we will give it a shot. Glad to know also how long to try for. Thanks!
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Old 03-30-2012, 01:59 PM   #4
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Gluten can cause an inflamatory response in some people. I can't say it took away all my joint pain, but I had a couple of things get much, much better. My knees almost completely cleared.
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Old 04-19-2012, 08:10 AM   #5
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Quote:
Originally Posted by carla70 View Post
MauraV thank you for reply. I was thinking that was what I should try. My daughter went gluten free last year, but ended up being her gallbladder. But now she has been sick again and she thinks its gluten also. Which I have heard that two in a family can be. She was tested last year and it wasn't celiac.

I think we will give it a shot. Glad to know also how long to try for. Thanks!
What Are Gluten Intolerance Symptoms?

Back to Top of Gluten Intolerance Symptoms

It may help you to have a more succinct gluten intolerance symptoms checklist. I will try to provide you one here, but keep in mind how there are over 250 documented symptoms of a gluten sensitivity and their manifestation varies greatly from person to person. With this list I think I have isolated both the most common symptoms and the most important symptoms you should know about right away. Some symptoms are rare and even counter-intuitive (for example, gluten intolerance and weight gain goes against the grain of normal gluten intolerance symptoms). Please let me know if you feel I have missed something obvious or important.

Abdominal Distention
Abdominal Pain and Cramping
Alternating Bouts of Diarrhea and Constipation
Anemia
Arthritis
Attention Deficit Disorder (ADD)
Bloating (see Gluten Intolerance Bloating)
Bone Density Loss
Borborygmi (stomach rumbling)
Constipation (see Celiac Disease Constipation)
Stunted Growth and Failure to Thrive
Depression, Anxiety and Irritability (see Celiac Depression)
Dermatitis Herpetiformis (skin rash — see my Dermatitis Herpetiformis article)
Diabetes
Diarrhea
Fatigue
Low Ferritin Symptoms
Malodorous Flatulence
Malodorous Stools
Gluten Ataxia (see my Gluten Ataxia article)
Grayish Stools
Hair Loss (Alopecia)
Headaches and Migraines
Hypoglycemia
Infertility (see Gluten Intolerance and Pregnancy)
Joint pain
Juvenile Idiopathic Arthritis
Lactose intolerance
Mouth sores or mouth ulcers
Nausea
Numbness or tingling in the patient’s hands and feet
Osteoporosis
Peripheral Neuropathy (including either a tingling or sensation of swelling your toes and fingers)
Sjogren’s Disease
Steatorrhea (high lipids in the stool, which may cause the stool to float)
Teeth and Gum Problems
Turner Syndrome
Vitamin and Mineral deficiencies
Vomiting
Unexplained Weight loss
Urticaria

My DH had these a before he stopped eating gluten. FoodIntol.com has step by step program that makes it easy to identify intolerances.
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Old 06-20-2012, 09:38 PM   #6
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MSNO8, re: "Gluten Ataxia"

I think you just saved what is left of my poor husband's life.
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Old 06-20-2012, 10:12 PM   #7
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MSNO8, re: "Gluten Ataxia"

I think you just saved what is left of my poor husband's life.
It has saved mine, I am so glad I could help.
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Old 06-22-2012, 09:16 PM   #8
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MSNO8 This is a very "healthy" 78 year old man, never smoked or eaten junk food, only an occasional glass of wine, who has hiked and fished Mt streams all his life--his cardiovascular system is fine and he has had every scan and test known to medical "science" ( ? ) All came back negative--yep, all tests reveal he is in perfect health--meanwhile he has suffered slight GI problems for several years, terrible fatigue, and unending general pain all over his body(much like they describe fibromyalgia) which has progressed to debilitating ataxia, brain fog, muscular wasting in his legs, tingling in hands and feet, difficulty focusing his eyes at times, problems with swallowing now and then, and lack of strength in his upper body. He says at times, he feels paralyzed.

(I often feel guilty because my own health is so great. Thanks to all the good information and dietary advice available here at LCF, I have wonderful energy and my doctor smiles every time he looks at my blood profiile, especially my lipids and BG)

My dear boy has had two separate tests for celiac (the last in 1998 at my insistence) and both times, the geniuses who saw the results said, "well, umm yes, you have some of the markers but the biopsy is negative so you dont have celiac" and that was that. (He has a PhD in Developmental Biology so knows something about the workings of the human body) And he kept telling doctor after doctor "My condition is somehow connected to my 'gut'" (Using the word "gut" in the anatomical/physiological sense biologists do) And not a single doctor including those at MAYO in Rochester, "heard" what he was really trying to tell them.

He now walks with a cane and staggers like a drunk when he gets up from a chair. I have kept saying, "I dont care if you dont have all the right markers for celiac, I think this is 'dietary' and gluten related,'" all to no avail And then last year I came across the phrase, "Gluten Intolerance" in some of my reading. I just KNEW that was his problem but he was still not totally convinced (is a bread lover.) Fortunately, he remembered knowing a brilliant and caring physician who had served with him on a committee at Emory University and in desperation, called him. This man (now semi-retired from practice) has taken over the case with genuine caring and a determination to find the cause of my husband's problems. More tests--many tests, all kinds of scans of his whole body including an FMRI of his brain. Nothing abnormal showed up from any of them And the doctor said, "you have obvious neurological damage of unknown cause and all your test results are negative, but we WILL keep on until we find the cause." He was very warm and respectful toward me and asked for my questions and observations, so I told him that because tests revealed some markers for 'gluten intolerance' I hoped a gluten free diet might help and he replied, "yes, I think we should try that-it certainly cannot do any harm-meantime, I will do more research and speak to some other people and do some more looking into a potential gluten connection." Well, before we could do anything, I came across those amazing, life-changing words in your list above: GLUTEN ATAXIA.

I said out loud OH MY GOD--THAT IS IT! I then Googled the phrase and e-mailed my husband two very detailed and convincing articles to read in the morning when he checked his e-mail. (Ironically, he ddint check his mail promptly as usual so I had to urge him to go and see what I had sent him in the middle of the night.) He read it and immediately e-mailed his doctor a quick note about what I had found and the doctor e-mailed back for him to come down early this next week for anti-gliadin assays. This means no gluten-free diet for the moment. I told hm, "Honey, go ahead and stuff yourself on croissants and bread."

My reading tells me he will probably never regain a lot of what he has lost because of permanent neurological damage, but I am sure (he is a very determined person) that with proper diet and physical therapy we will see some major improvements as time goes on. It will take patience and time but we have those. What is remarkable is that despite my husband's "disability" he has continued to split logs for our fireplace insert wood stove and to raise orchid, about 150 prize English roses, peonies, iris, acres of azaleas and rhododendrons by working awhile and resting and then going and working again. (We live at the edge of the Blue Ridge Mountains so all those things thrive here on our property with his faithful help.)

He told me two weeks ago that he expected to be in a wheelchair before another year is up. Thanks to you, probably not. I dont know what Guardian Angel sent me to the LCF celiac/gluten forum at that particular moment, but there you were with your list and I will be forever grateful that in so generously helping someone else, you have given us a chance for a brighter future than we'd ever have dreamed of 2 weeks ago..

Last edited by maizenbluebabe; 06-22-2012 at 09:22 PM..
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Old 06-23-2012, 11:53 PM   #9
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Crossing fingers for a lot of improvement in your husband. What a strong guy!
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Old 06-24-2012, 08:24 AM   #10
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Crossing fingers for a lot of improvement in your husband. What a strong guy!
Thank you for your sweet message, MauraV, I will bet there is not a message board on the entire web so filled with wise, helpful and compassionate people as LCF. The things I have learned here have literally given me back my own health (which can only be described as glowing now even though there is still 15 pounds too much of me ) Now, if we could just "fix" my darling husband, life would be even better.

I will check in here to the Celiac forum now and then with updates and questions because if this gluten-free diet helps him, it may help someone else to know about it, especially Gluten Ataxia. Knowing how difficult it is to really diagnose Gluten Intolerance, I have talked to him about gong on a GF way of life no matter how his test results come back, and he has agreed that no matter what the tests show, he will faithfully eat only gluten-free and for the period of the foreseeable future, will not go out to eat or have anything that I do not personally fix. (Oh how spoiled he will be to have his own personal Chef. ) And until he goes for his antibody test on Tuesday, he is stuffing himself with gluten just as I have urged him to do
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Old 06-24-2012, 05:49 PM   #11
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I have gluten ataxia as well as celiac disease, and yes, it does get better. Initially, about 10 years ago, I was completely bedridden for over a year because I also have vertigo as well as the nerve damage.

Getting a chiropractic adjustment helped me tremendously. My husband literally carried me into his office, and I was able to walk back out on my own power. My neck was rotated, but it had been that way for so long that my body thought out-of-place was normal. It took quite a while before we could get it to stay in place.

You might also want to take a look at Sensory Processing Disorder. The vestibular and proprioceptive sensory systems are connected to balance problems. I have trouble with depth perception, I drop things for no reason, and have trouble estimating exactly where things are at so I'm likely to knock things over. When I first became ill, my right leg would jerk the wrong way for no reason, too. I was always afraid I was going to break my leg. My legs would just suddenly go limp on me, and I would hit the ground. Those are all proprioceptive problems.

In addition, for many people, once you remove gluten, other food sensitivities can surface that were masked by the gluten, so just be aware of that. The most typical additional sensitivities for those sensitive to gluten are dairy, soy and corn.

For me, cow's dairy aggravates the ataxia. I lose my balance, get dizzy, and cannot walk whenever I try to eat cheese made from cow's milk. I seem to do okay with goat cheese, but I can't afford to eat that very much. I also cannot eat corn or corn derivatives such as citric acid and natural flavorings. Almost all dairy products are contaminated with corn derivatives (they are in all products that have been enriched such as almond milk as well), so I don't know if my problems with dairy are actually corn related or not.

I am extremely sensitive to gluten. So sensitive that I had to quit my part-time job as a cook at a boys' home. Also, my husband had to go gluten free himself before I started to get better. Afterwards, we discovered that he has dermatitis herpetiformis, so it was best for him anyways. He still eats a little dairy and corn. I don't know how much that stuff being in the house is still affecting me. I have gone from being bedridden to having a somewhat normal life now. I have to work from home, but at least I can do things for myself now. In the beginning, I couldn't even dress myself.

The bummer is that I've probably had this problem for way too many years prior to everything going completely out on me to ever fully recover. Then again, getting corn out of my diet completely is almost impossible. It's in everything. Doctors have not been too much help. I've had to figure most of it out on my own. But I hardly have any got-to-go-to-bed days anymore though, so things could be a whole lot worse.
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Old 06-27-2012, 02:16 PM   #12
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Maizenbluebabe - I'd love to hear what your hubby's antibody test results are but good for you (and him) to agree to getting off gluten no matter what.

Lioness - I'm so glad you finally figured out what was wrong and are doing better. It's such an insidious intolerance/disease and seems to baffle everyone.
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Old 06-28-2012, 08:41 PM   #13
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HI Gang, we are now awaiting the results of his anti-body tests and I will let you know whenever we hear. Meanwhile, I have begun to stock up on a few specialty flours which are both low in gluten and not high in carbs so that I can bake him a few things to enjoy. We mostly eat whole foods anyhow, so it will not be a huge adjustment, but he does still like a few "bready" things. ( I am already gluten-free and he is joining me by making just a few changes in what he eats.),

More and more as time goes by, I realize the Great American Food Industry is in business to make money and they don't care how they do it just so they make a profit. That is their choice, but thanks to hanging around on this site for a few years, I have learned that we do not have to go over the diet (and diabetic) cliff with the rest of the lemmings. A trip to the grocery store anymore is pretty sad--carts loaded high with junk food go out the door being pushed by people I know are eating their way into an early grave. And much as I want to, I know I cant run up to them and plead with them not to do it.

We are so blessed to have this board and each other--and to be able to order specialty items from Netrition which would never be available locally (at least where I live--Whole Foods and Trader Joes are a 180 mile round trip) (And to be fair, our local "supermarket" is beginning to label things gluten-free and to carry a healthier choice of foods.)
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Old 07-05-2012, 09:45 PM   #14
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We have heard the test results--actually quite disappointing to me-all of DH's gluten figures came out normal (negative for antibodies) But our doc, BLESS HIS DEAR HEART--indicated that "the tests do not always tell the story accurately" and he encouraged us to go on and stick with a gluten free diet--we are doing that and today, my DH had a fairly decent day although his ataxia was noticeable for awhile this evening. He has an appointment the end of July with a Rheumatologist at Emory Hospital who specializes in auto-immune disorders. Meanwhile he (and I) are gluten free and I am so grateful to the people in this forum for sharing their experiences and advice. This diet is our last hope really; he is so sick and even the guys at Mayo (the Rochester branch) could not solve the mystery of his pain and ataxia and other neurological symptoms. But I hope that perhaps sharing our experience will help someone else in some way.
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Old 07-26-2012, 02:21 PM   #15
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Just wishing you all well And good for your doc! He's right - the tests don't always tell the whole story, or even a wee bit of it.
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Old 08-08-2012, 09:30 AM   #16
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Just read this thread, because I'm beginning to think I have both lactose intolerance and gluten intolerance. I've already made a doctor's appointment and hope he will be able to figure out if it's true.

Celiac disease does run in my mom's family, as I only discovered a few years ago.
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Old 08-09-2012, 09:27 AM   #17
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Originally Posted by maizenbluebabe View Post
We have heard the test results--actually quite disappointing to me-all of DH's gluten figures came out normal (negative for antibodies) But our doc, BLESS HIS DEAR HEART--indicated that "the tests do not always tell the story accurately" and he encouraged us to go on and stick with a gluten free diet--we are doing that and today, my DH had a fairly decent day although his ataxia was noticeable for awhile this evening. He has an appointment the end of July with a Rheumatologist at Emory Hospital who specializes in auto-immune disorders. Meanwhile he (and I) are gluten free and I am so grateful to the people in this forum for sharing their experiences and advice. This diet is our last hope really; he is so sick and even the guys at Mayo (the Rochester branch) could not solve the mystery of his pain and ataxia and other neurological symptoms. But I hope that perhaps sharing our experience will help someone else in some way.
Been reading your story and wondering how your dh is doing now?
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Old 09-25-2012, 05:06 PM   #18
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We have heard the test results--actually quite disappointing to me-all of DH's gluten figures came out normal (negative for antibodies) But our doc, BLESS HIS DEAR HEART--indicated that "the tests do not always tell the story accurately" and he encouraged us to go on and stick with a gluten free diet--we are doing that and today, my DH had a fairly decent day although his ataxia was noticeable for awhile this evening. He has an appointment the end of July with a Rheumatologist at Emory Hospital who specializes in auto-immune disorders. Meanwhile he (and I) are gluten free and I am so grateful to the people in this forum for sharing their experiences and advice. This diet is our last hope really; he is so sick and even the guys at Mayo (the Rochester branch) could not solve the mystery of his pain and ataxia and other neurological symptoms. But I hope that perhaps sharing our experience will help someone else in some way.
Does your husband consume anything with artificial sweeteners in them... aspartame or sucralose? A lot of people can tolerate them, but others will cause severe problems in people like rheumatoid arthritis, severe migraines, brain fog, achy joints, etc. Was just curious if that could be contributing to his poor health... I sure do hope he's better!!!
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Old 09-26-2012, 12:08 PM   #19
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Hello dear. I suffer from rheumatoid arthritis. I have been gluten free for a year but while gluten causes problems for MANY people, my problem seems to be with MILK. I quit drinking milk after a strict elimination diet and have felt great and been off meds for nearly two years.

My suggestion from anyone suffering IBS, autoimmune disease or really any illness is to try a strict elimination diet, go gluten and dairy free, and see the results. Most people are too stuck on their way of eating to try it but trust me, your desire for bread and milk goes away after a few weeks!
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Old 10-07-2012, 03:07 PM   #20
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I found out that I was gluten intolerance. I had sever bloating. No kidding after I eat anything with gluten in it I littlerly gain 10lb of nothing but bloat in my belly. Last New Years weekend I spent the whole time in bed crying because of my belly pain. I did go to the doc, they could not find nothing wrong with me. I spent over $2000 on doc and nothing. Then my sister in law said she had the same probme and relized she can not eat gluten. I was out of options and had no more money. So I just started leving out gluten in my diet and wow with in a week all my symptoms were gone. For the first time in a long time I felt normal and good. Of coarse I thought it might be a fluke I mean realy me the bread make of the family cant eat bread. So yes I ate one of my home made bread and then regret only 15 min later. Now I have just came to expect that it is what it is. So now I don't even cook with it anymore. My whole family gone g-free. I cant even eat the atkins bars. Yesterday I had one for breakfast and I even looked at the ingredients and I didn't see any gluten in it, but sure enough 15 min later I bloated and its been and day and It still has not gone down. It uselly takes a good week to get back to normal after I eat gluten. Uggggg Atkins Bar bad move on my part now I know. I end up giving the rest of them to my mother in law.
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Old 10-10-2012, 07:30 AM   #21
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Also I never knew why I would get a weird metallic taste in my mouth, like I was sucking pennies. Finally realized its probably related to gluten.

Another thought I had while reading about gluten ataxia.. it says it attacks your brain and I have also read that inflammation may be the entire cause of alzheimers (instead of being a symptom of it). Since gluten causes inflammation.. well I think you guys know what I am getting at!
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Old 04-08-2013, 09:36 AM   #22
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Can GI be a biproduct of cutting glutan out of your diet?

Because of the low carb lifestyle, I have basically walked away from wheat flour and glutan. Now, when I do eat something with wheat or glutan in it, I get all the side effects of glutan intolerance. I feel gassy and bloated and get digestive issues for days. I don't remember this before low carbing. Can eliminating wheat bring on an intolerance to it?
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Old 04-11-2013, 12:48 PM   #23
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Originally Posted by maizenbluebabe View Post
We have heard the test results--actually quite disappointing to me-all of DH's gluten figures came out normal (negative for antibodies) But our doc, BLESS HIS DEAR HEART--indicated that "the tests do not always tell the story accurately" and he encouraged us to go on and stick with a gluten free diet--we are doing that and today, my DH had a fairly decent day although his ataxia was noticeable for awhile this evening. He has an appointment the end of July with a Rheumatologist at Emory Hospital who specializes in auto-immune disorders. Meanwhile he (and I) are gluten free and I am so grateful to the people in this forum for sharing their experiences and advice. This diet is our last hope really; he is so sick and even the guys at Mayo (the Rochester branch) could not solve the mystery of his pain and ataxia and other neurological symptoms. But I hope that perhaps sharing our experience will help someone else in some way.
I also test negative. But I still am gluten free because when I eat a gluten containing food, I have either severe diarrhea OR constipation. Stomach cramping and bloating.( I was once diagnosed with IBS) I also break out in hives all over my body, including my ears and scalp, I have a burning sensation all over, like my nerve endings are on fire. The only thing that helps that is heat and time. I also have pretty severe brain fog, pain in my joints, especially my feet, I notice that the tendinitis in my wrists flare up. My regular allergy symptoms become very severe. I'm sure there is more, but I don't recall some of the minor things. I have tested this myself more than once, trying to go back to eating wheat/gluten. Every time within a couple hours these things come back.

Quote:
Originally Posted by bethany66 View Post
Because of the low carb lifestyle, I have basically walked away from wheat flour and glutan. Now, when I do eat something with wheat or glutan in it, I get all the side effects of glutan intolerance. I feel gassy and bloated and get digestive issues for days. I don't remember this before low carbing. Can eliminating wheat bring on an intolerance to it?
Years ago when I was first low carbing, I noticed the same thing. But I kept slowing adding gluten products anyway. what used to happen for me, was I could eat wheat/gluten some. Like I could have a sandwich and have small side effects, such as bloating. But over the years it has gotten worse, now to the point i avoid it altogether. And for a long time, the longer I ate wheat the less symptomatic I was, until it manifested in other ways, such as hives and rashes, worsening allergy symptoms, etc.
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Old 04-13-2013, 09:00 PM   #24
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Wow! Lioness, and all of you are awesome. What great information! Lioness, I feel like you, with the sensory processing, the symptoms that others have mentioned, etc. What a bummer that for all the way into my middle-aged life I have been struggling harder at learning, at doing things, and not really getting that these things are toxic to me. I used to wonder WHY others could consume these things and maybe not feel great or feel like it was junky, but for me, it was like going unconscious. The bloating was huge, as well as all the joint pain. And the compulsion to consume these things in spite of this, was tremendous. It was easier to push aside and ignore when I was younger, but very rapidly, in the last decade, it became more and more obvious. Eliminating wheat and these other things has been hard because I think I am addicted to what isn't good for me. But I definitely feel like I am newly born without it, no exaggeration. Life has opened up. Going off this way of eating is a disaster for me.

And as for the cognitive issues, I have been diagnosed with learning disability, yet told I am highly intelligent. Well, which is it???? I think I may learn differently for sure, BUT ALSO, all that toxic food coursing through me makes me forgetful, so I can't remember words, names, etc. I notice now that I am off all this stuff, I ask myself sort of silly stuff that I normally wouldn't remember and I can remember pretty much all of it! In addition, now I am able to remember tiny details from my childhood that I had no memory of whatsoever before. I think I don't care if medicine says these things don't exist. If we can feel them, and see a huge difference once we remove the offending foods, then we know there is an issue, whether or not medicine decides it exists!

What a great threat! Thanks everyone for the wonderful info!
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