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Old 09-30-2012, 08:02 AM   #1
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I think my daughter and I may be gluten intolerant.

How do I get a medical proof?

I have depression, migranes, etc when eating gluten. My daughter suffers with extreme mood swings, depression, and is low in weight and just can't gain (we all wish don't we? lol)

I have stubborn family who thinks im nuts (well actually they are hubbs family but mine now too! lol)

They think that I like read all this crap and make stuff up in my head.. I would love to be able to get some kind of testing done on us, just so I can show it to family members, friends, people who watch my children etc.. Just so they don't think im crazy anymore. I'm hoping that this would also help level out my daughters moods, shes only 6 now, But I can see that in the future if she keeps on this path I'm afraid she will have to be medicated..

All help would be appriciated!
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Old 09-30-2012, 08:26 AM   #2
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There is testing, but it doesn't catch every case. You can try it, but don't be surprised if it comes back negative.

The best thing to do is take her off gluten and see what happens. You might chart or somehow keep records on her symptoms with and without gluten. It will be difficult for a 6 year old, but there are many websites and blogs out there with recipes. You might choose a time when she is out of school and you will have time at home to control every thing she eats and see how different things affect her.

I haven't read it, but many people recommend the book Wheat Belly.

Edited to add: She is your child and her health is ultimately your responsibility. If gluten is really the culprit, others will have to get on board or contact will need to be limited.
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Old 09-30-2012, 03:05 PM   #3
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I am suspicious that any testing you find will be from a group that doesn't seem any better than the "kooky stuff you read online." not sure you are going to convince them. why do you need to?
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Old 10-02-2012, 07:08 PM   #4
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gluten sensitivity testing

Hi. I just joined Low Carb Friends and was browsing around and found your post. My son is on the autistic spectrum and so I have been reading about gluten sensitivity alot. So my 3 kids were tested for antibodies via a blood test. The results were negative and yet my son has the genetics for celiac disease. He would get mouth sores when eating gluten.

I had myself, and my two sons tested for gluten sensitivity using Enterolabs testing. You can google their website and find it. You may get your insurance company to pay for it but we have a PPO and so we paid out of pocket. I think it was $129.00 for each test. All us tested positive (stool testing) for gluten sensitivity. I went gluten free and can now tell when I have accidently eaten gluten.

I hope this helps you in your quest for health for yourself and your family.

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Old 10-31-2012, 04:42 PM   #5
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I have to say that getting tested may likely NOT give you the answers that you are looking for, because many times only advanced cases of celiac disease will test positive, while there is a huge spectrum of gluten intolerance that does not show up.

Get off the wheat... eat only whole foods (nothing processed), and see how you feel. For me, one week was all it took to make the decision never to eat wheat again, and that also goes for my husband and 14 yr old son, who agree completely that their life and health is so much better without this poison. The book Wheat Belly by Dr. William Davis provides a wealth of information, and his Wheat Belly blog and Facebook page are very active as well. I post there often and there is a thriving community committed to this way of eating.

I wish for myself that I had discovered this 30 years ago, and for my son that I had had the knowledge to suspect gluten when he was just 6 like your daughter is. He's very ADD and now that he is off grains, his focus has sharply improved, as has his confidence and level-headedness. Wheat (not just the gluten in wheat, there are other toxic components as well) has the potential for some very nasty psychological effects as well as physical. Many people go through withdrawals when they remove it from their diet... what other "food" does that other than perhaps sugar?

I am far past the point of worrying about people thinking I'm crazy.... if crazy feels this good, sign me up for permanent crazy status! (No more severe joint pain, headaches and migraines, acid reflux, IBS, brain fog, bloating, and down 27 lbs.)

Follow your instincts!!! And best of luck with getting support from your family, it can help a lot.

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Old 11-03-2012, 12:47 PM   #6
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Kerry--I am convinced my daughter, who is only 11 years old, is celiac as well. All the testing the endocrinologist does shows negative for it. Her gastro won't even consider it! She has been diagnosed as a type 1 diabetic for over a year now and I know there is a strong link between celiac and diabetes. So even though the test doesn't show it, I know in my heart--my gut instinct if you will--that she is. She has the antibodies for Hashimoto's as well as other autoimmune issues. I will be starting her on a gluten free diet very soon. I just quit my job (last day is this Weds) just so I can do this! My youngest son was just diagnosed with asthma so moving to a gluten free lifestyle will help my whole family.

My doctor believes I am gluten sensitive. I will have to see about that test janetelaine posted about. I am so glad I saw this post!!!
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Old 11-04-2012, 05:04 PM   #7
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I have not had any tests done & don't plan to. From what I have read they are often wrong. With my luck they would come back inconclusive. All they really do is tell you to eliminate the wheat & gluten anyway.

Eliminating wheat & gluten made a huge difference in how I feel. That is what is considered the real test. I don't need a label from a doctor.
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Old 11-05-2012, 02:04 PM   #8
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Quote:
Originally Posted by DiamondDeb View Post
I have not had any tests done & don't plan to. From what I have read they are often wrong. With my luck they would come back inconclusive. All they really do is tell you to eliminate the wheat & gluten anyway.

Eliminating wheat & gluten made a huge difference in how I feel. That is what is considered the real test. I don't need a label from a doctor.
What I hate is that they dismiss it. I just cannot stand that. I know that one should not rely on any 1 test, for Pete's sake I just got back from the doc today for my thyroid. I was going to ask for further testing but decided against it. She is not into my way of thinking about diet/nutrition/supplements so I would be banging my head against the wall anyway I just go there for my Armour prescription. At least she is willing to do that for me! There is a lab near my town that will do the testing I want, no questions asked. I am so glad we do have the option to do some kinds of testing on our own. At least we can do that!
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Old 11-06-2012, 06:05 PM   #9
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Originally Posted by dawnyama View Post
What I hate is that they dismiss it. I just cannot stand that. I know that one should not rely on any 1 test, for Pete's sake I just got back from the doc today for my thyroid. I was going to ask for further testing but decided against it. She is not into my way of thinking about diet/nutrition/supplements so I would be banging my head against the wall anyway I just go there for my Armour prescription. At least she is willing to do that for me! There is a lab near my town that will do the testing I want, no questions asked. I am so glad we do have the option to do some kinds of testing on our own. At least we can do that!
Yes, that is one reason I think, "Why bother?" And if the tests come back fine it doesn't really mean anything but the doctor will think it does.

At least the wheat/gluten we can control on our own & don't need an Rx for it. In that way it is so much better than having thyroid problems that the doctor is unable to recognize because of lack of education & training (not to mention inability to Google).
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Old 01-02-2013, 12:53 PM   #10
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For DiamondDeb:

Gluten is NOT necessary in ANY diet, imo. Not too many humans can digest it anyway. It was a way to make MORE items CHEAPER and QUICKER. Who cares about what it may do to one's health? (Don't get me started on gmos...please).

Just get rid of it. Out of the diet, the kitchen - YOUR HOUSE!! We did a few years ago and it was a very healthy change. My daughter did test sensitive *blood tests. But also to soy, corn (we don't miss this cattle feed at all), egg whites, casein...to name a couple.

We eat as raw as possible. But we do enjoy cooked Bison tacos/fajitas. Eggs *limited for her. A bit of free range organically fed turkey and chicken. Wild caught Salmon or Cod. (No tuna ever again).

Fresh organic veggies. Fresh organic fruits. (Sometimes raw, blended, or frozen and made into syrup for pancakes made with quiona, tapioca, rice flours, etc.

We are NOT missing a thing. In fact, I need to go back on low calorie diet for awhile to lose a couple pounds.

Watch your "additives" in processed food PLEASE. Try to eat LESS processed and fast food restaurants as much as you can. Please do NOT rely on ANY government based, food corporation supported entity for what is allowed to be passed as food. Do not. (Did you know that 40% of the FDA's budget comes from pharmaceutical manufacturers? You think the FDA is gonna risk losing $$$ by telling you the TRUTH? They rely on SPIN)

Many severe health issues (thyroid) began when the baking industry decided to add the cheaper bromine/bromide and removed Iodine from baked goods. So, the "industry" added iodine to salt and soon the SALT scare came to be. Seems as if unhealthy humans are the goal, no? Why is this allowed? Oh, right - they pay off the politicians, the lobbyists, the actual government organizations that are SUPPOSED to protect. (we use celtic sea salt)

No one NEEDS gluten. In any form. Watch your personal items as well. Is hidden in toothpaste (ours are fluoride free, too), shampoos, etc. They stick that junk in everything. Celiac Solution

Be sure to take really good probiotics to heal that gut, too. You can't see the inflammation that is happening and usually only see a doctor when it is BAD. Don't let it get to that point. (My daughter's only clue to a sensitivity was exhaustion. It crippled her at one point and it went on for YEARS. Docs just blamed her youth, partying -which she didn't, maybe anemia - was never tested, etc., etc., etc. Until that one doctor who went beyond the others and tested.)

Eat healthy foods. REAL foods. No chips. No colas. NO PROCESSED. Make some raised beds and grow your own organic veggies/berries. It's fun, educational and delicious.

You will be rewarded with good health!

Last edited by Mazella09; 01-02-2013 at 01:11 PM..
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Old 01-03-2013, 10:43 AM   #11
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I agree with all I read here. It's a great thread. I don't have a genetic test to prove it, but I believe I have the genes for Celiac. I have Hashi's and I have high antibodies for type 1 diabetes. I really believe if I kept on eating wheat especially I would have more full blown autoimmune issues than I do, plus I'd weigh lots more and have joint pain.

Nope, not worth it. I wish there were definitive tests, even tho' I don't need them to convince me. I am so grateful for the web and Google. I'd be clueless without them.
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Old 01-03-2013, 01:29 PM   #12
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girondet - my daughter has Hashi's too. (Most Hashi's ARE gluten sensitive/allergic) And pcos. EBV+ And "sensitive" to gluten and all the rest.

Take care of yourself. *We opted out of the invasive small intestine biopsy that is claimed to be the tell all positive for sure test. Ridiculous! We went with the bloods and voila - she is "sensitive." So, good bye gluten. Haven't looked back.

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Old 01-04-2013, 09:41 AM   #13
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I know there are people who must think I'm overzealous about diet and they are sure whole grain is good for everybody. The ones who would have criticized me most have passed away (parents, in-laws).I just don't tell people most of the time..... If I have to say something about it I just say I found out by accident I have antibodies for celiac disease and if I avoid grains I may never have to have the full blown disease. It's the truth, a bit modified for explanatory purposes.

Anyway, it's nobody's business. I know this is much harder when you have children and all your relatives seem inclined to give their opinion on how you're raising them....I'm so glad those days are over for me.....stay strong and look for support where you can get it.

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Old 01-10-2013, 08:01 AM   #14
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I have had both the blood tests and the biopsy, both came back negative, so doctor told me you dont have celiac.

Went to another doctor (allergist who also had done a second specialty in autoimmune and the effect on allergies) who listed to my issues, the allergies and reactions I had, and turned to me and said "whatever the tests say, you have celiac. It runs in your family, and the biopsy looks at point A, but you may have problems in Point D. Cut out the wheat now"...

Best way i am hearing now is genetic marker, if your family has a history of Rheumatoid Arthritus, Hashimotos, Celiac, or any of the genetic autoimmune, there is a good chance of the marker showing
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Old 01-14-2013, 06:53 AM   #15
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@eterprincess -- You may NOT have full blown CELIAC (yet). You would need to undergo many invasive tests to confirm. Why wait until that happens? why wait until the junk has eaten holes in your digestive system causing MUCH inflammation that your system reacts to in various forms like allergies, arthritis, constipation, weight gain, immune disorders, the list is quite long, even when the tests DONT show a problem.

I am surprised a gluten free diet wasn't suggested for a month or two, to see HOW YOU FEEL during. And I mean elimination. Gluten/rye/barley AND oats, too! It is a different way to purchase items. It is a lifestyle change. You may want to slip back - you are human.

Do NOT believe corn is the way to go. Cattle and chickens are fed corn to make them fat. The corn today is genetically modified. If you go corn - go organic products.

Just a suggestion.



The doctor is convinced--you are fine. You will probably NEVER be tested for gluten again. Sadly, too.

Last edited by Mazella09; 01-14-2013 at 06:55 AM..
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Old 01-15-2013, 06:25 PM   #16
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I do not have celiac (and have no gastro/rash issues), but cut out the wheat December 28th and feel 1,000,000 times better. All of the symptoms I was having that kept co-workers dragging me to the ER last fall disappeared in days after I pulled the grains out of my diet (most notably, vertigo and heart palpitations). Not a fan of doctors/medical facilities, I kicked and screamed, but they kept taking me because I would reel around the office like a 90 year old drunk and start slurring my words mid-sentence - they were afraid I was having a stroke.

My neurologist is also a naturopath by hobby and suggested killing the wheat. That stuff is in EVERYTHING (#2 ingredient in Twizzlers, if you can believe it).

The vertigo stopped, as did the hand cramping, palpitations, and slurring of words in under 48 hours of being wheat free. Apparently, the gliadin in wheat really sets off symptoms of auto-immune like MS (me), Lupus, Rheumatoid Arthritis and heaven only knows what else. Wouldn't be surprised to learn that there is a connection to the autism spectrum and the explosion of ADD/ADHD "diagnosis" levels.

On the testing - they can only test specifically for celiac/celiac sprue (which has exact markers).

Why not just try a month of (admittedly exhausting) label reading and pull the wheat out of the diet and see if a bunch of the issues don't clear up.

As far as I am concerned - modern (post 1970s) wheat is poison, and I don't say that lightly. When 2 slices of wheat bread raise a 1 hour later blood sugar reading higher than a 1 hour reading the next day after a snickers bar - we need to pay attention. And they wonder why we have an obesity and diabetes II epidemic in this country...

Best wishes to you. I don't know if you are still following this from last September, but I am subscribing for updates. If you decide to try it for her for a few weeks, please update.

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