Celiac & Gluten Help & Support Needed...Please!

[kupper]

Hi- My name is Angie and I just joined. I would like some opinions and advice...my situation is this: I am a 32yr old mom of 3 boys...yes- busy and stressed. When I was a child my parents treated me for many bouts of consitpation...I also had bad teeth due to lack of properly fomed enamel. I was always very skinny with the exception of my bloated belly which they called a "grandpa belly" . Fast forward to teen years- filled with stress from unstable home and being told I was "bi-polar" and put on lithium and zoloft. I quit the lithium- made me a zombie. I was placed on birth control for whacked out periods from hell... I was still skinny except the belly. Also had alot of trouble with gas, diareaha and constipation...but told other then anemia I was healthy. Fast forward to 3 kids (all spaced 4 years apart by my bodys doing..not mine!)...lol...was told that I am not bi-polar and that I outgrew it.. but remain on my small dose of zoloft for emotional stability. Still have gastro probs more noticible when I eat alot of wheat products and bran. Now on thyroid for hypo-throyid... and weigh a whopping 199lbs on a 5'5" frame (all went to hell after 2nd child!). I was tested years ago for autoimmune but said I was fine... but after reading and much study of facts & my past I am beginning to think its a deffinate posibility! I am of Irish, Native American and English decent...don't know if that makes a difference. Anywho... I am not sure where to start- do I do Atkins or is there a better gluten free diet anyone can recommend?? All I know is that I want to lose 80 lbs by Oct of 2009 (BFF wedding..lol..don't want to be the "fat" girl) and more then anything... I want to get off extra meds...be Happy and Healthy for myself and my kids!! I need any and all advice and support as I am short on both here.... so in advance...Thanks!!

[nonstickpam107]

Angie, the Irish and English origins both have allergic, as well as thyroid problems. I don't know where you are, but I have lists of doctors who are patient recommended for thyroid and such. And I'm Celiac, Hashimoto's hypo (there are other types), and a couple of other autoimmune conditions. Nothing made me feel 'better' than doing Protein Power (Dr. Michael Eades) and then, after losing about 50 pounds, I was getting pretty near optimized by a doctor I had found. Yes, lowcarb will work for aleviating symptoms..gluten free will help. Constipation is one of the major symptoms of hypothyroidism too. You'll want your iron and ferritin done because low iron will 'mimic' hypothyroid symptoms.

Pam

[Agee]

When I quit gluten I gave myself permission to not diet for the first year - beyond NO gluten and NO dairy. I needed time to figure out exactly what was going on with my body and it was hard enough to go gluten and dairy free by itself.
I did end up losing about 10 lbs over the year that I didn't diet - but I also was able to exercise more since I didn't feel so horrible all the time. Since then I've not actually been able to lose any weight, but I seem to be an anomaly on this board.
Atkins - if you stick to whole foods - is a perfect gluten free diet. Eating gluten free substitutes for regular foods (gf baked things, specifically), is actually more caloric than the foods with gluten, so avoiding these is a good idea.
Good luck! And I hope you feel better soon.
A

[msbaggypants]

I've just realized I'm allergic to wheat/gluten. I have problems with some maltodextrins, too.

What should I do to see if my kids might be allergic, too? Is this something they are born with or develop because of too much stress, or eating high gluten foods?

TIA

[PFmommy]

Celiac is a genetic disease. If you've been tested for celiac and are positive, then your children should be tested also. After I was diagnosed, I had my oldest (and only at the time) child test once a year for almost three years before she finally showed positive. I did this because my mother has celiac and I also have aunts, uncles, and cousins with it. Celiac is strange, because you are born with the ability to have celiac, but may never "develop" it. It's like a dormant bug in some people waiting for the right circumstances to kick into over drive. I think for me it was my first pregnancy. I am sure I had it before then, but the stress of the pregnancy, a cross country move and a trans-atlantic move, having a c-section in a foreign country kicked it into overdrive.

If you think your children are celiacs, then you need to get a blood test. Actually, it is a bunch of tests, but they only should need one vial of blood. If any of those tests come back positive, then they will probably want to do an Upper-GI with a biopsy of the small intestine. (I've had someone say that it can't be an upper-GI, because they go into the small intestine, but that is what they labeled it as when I had it done.) If the biopsy comes back positive, then many doctors believe you have a "Gold Standard" diagnosis. If it comes back negative, then some doctors will say you can't have it. However, all that really shows is that the celiac has damaged those areas of the small intestines that they biopsied.

If you are not interested in doing those tests, then you can just do a gluten free challenge, and see if your children respond positively to going gluten free. Do they have specific problems that you think might be caused by gluten?

[msbaggypants]

I'm really not into the tests. I think my daughter might be sensitive, but she probably has no intestinal damage for them to find, she's only 7 and doesn't complain about digestive problems.

I have taken her mostly off of wheat, and she has lost quite a bit of weight. I don't weigh her, but she was pretty puffy right around Christmas. All her clothes that were tight (size 8) are now loose, so for her size was quite a change. She isn't bony-skinny but just right. I think she has less craving for the sweets now, she isn't so picky. It's been probably 3 weeks, so still pretty early. But, the change is definately positive.

[PFmommy]

That is good. I only suggest tests for those that need absolute proof that they have to give up gluten. Supposedly, a positive Celiac diagnosis can affect your insurablity, I don't know how true this is because right now I am fully covered no matter what.

It sounds like your daughter is doing well on a wheat free diet. Are just avoiding wheat only or all gluten?

[PFmommy]

Originally Posted by kupper

Hi- My name is Angie and I just joined. I would like some opinions and advice...my situation is this: I am a 32yr old mom of 3 boys...yes- busy and stressed. When I was a child my parents treated me for many bouts of consitpation...I also had bad teeth due to lack of properly fomed enamel. I was always very skinny with the exception of my bloated belly which they called a "grandpa belly" . Fast forward to teen years- filled with stress from unstable home and being told I was "bi-polar" and put on lithium and zoloft. I quit the lithium- made me a zombie. I was placed on birth control for whacked out periods from hell... I was still skinny except the belly. Also had alot of trouble with gas, diareaha and constipation...but told other then anemia I was healthy. Fast forward to 3 kids (all spaced 4 years apart by my bodys doing..not mine!)...lol...was told that I am not bi-polar and that I outgrew it.. but remain on my small dose of zoloft for emotional stability. Still have gastro probs more noticible when I eat alot of wheat products and bran. Now on thyroid for hypo-throyid... and weigh a whopping 199lbs on a 5'5" frame (all went to hell after 2nd child!). I was tested years ago for autoimmune but said I was fine... but after reading and much study of facts & my past I am beginning to think its a deffinate posibility! I am of Irish, Native American and English decent...don't know if that makes a difference. Anywho... I am not sure where to start- do I do Atkins or is there a better gluten free diet anyone can recommend?? All I know is that I want to lose 80 lbs by Oct of 2009 (BFF wedding..lol..don't want to be the "fat" girl) and more then anything... I want to get off extra meds...be Happy and Healthy for myself and my kids!! I need any and all advice and support as I am short on both here.... so in advance...Thanks!!

You kind of sound like my mom. She actually almost died before someone diagnosed her with Celiac. When she was a child they put her on valium because of stomach aches that they said were caused by nerves.

I was diagnosed with depression, but I even though I know I am prone to it, it really only flares up after I get glutened. Insomnia too. No gluten, I can sleep pretty well. Gluten, I am up and just useless.

I am doing South Beach right now, and it is going pretty well. I also believe that Celiac caused me to be over weight. I know that I chose to eat, but I believe that the Celiac damaged my small intestines enough that I wasn't getting nutrients that my body needed, so it told me I was hungry, even though I may have just put away enough food to feed two or three people. I found out after years of having doctors tell me that I couldn't have Celiac because I was fat, that hunger pains don't come from the stomach. They come from your blood. IF you don't have enough nutrients in your blood, your brain says you need to eat. So, as the damage got worse, so did my need to eat.

This may sound funny, but does your gas stink so bad that you fear the EPA may quarantine you to prevent damage to the environment?

[msbaggypants]

Originally Posted by PFmommy

That is good. I only suggest tests for those that need absolute proof that they have to give up gluten. Supposedly, a positive Celiac diagnosis can affect your insurablity, I don't know how true this is because right now I am fully covered no matter what.

It sounds like your daughter is doing well on a wheat free diet. Are just avoiding wheat only or all gluten?

Never thought about the insurance.

I am not avoiding yet, just cutting back the wheat/gluten. I'm beginning to get very opposed to the other junk that has gluten, like maltodextrin, malt, msg, etc. If the meal is up to me, she has no wheat. Everything else is pretty much natural, so no hidded gluten. If we go somewhere and she is served spaghetti, she can eat it. I just want her body to be used to natural food as much of the time as possible so her "stop eating" signals work, and she will choose good food first.
I'm thinking sprouted grains might work for us, just started reading about that. Anyone have any experience with that?

[PFmommy]

Maltodextrin isn't gluten based as far as I know. My mom, I think, has tried sprouted grains. Her cousin is into that stuff. If spelt is considered a sprouted grain, it made her sick.

Germany has some awesome gluten free spaghetti. Everyone I serve it to asks if it safe for me to eat.

[msbaggypants]

Maltodextrin might or might not be based on wheat. It is a starch, and in the US it's supposed to be corn or potato based. If I have an issue with something flavored or prepackaged, it's usually maltodextrin. It's in my flavored almonds, but doesn't bother, but I made some SF russian tea, and either the SF tang or lemonade bothered me, both had maltodextrin. The malt vinegar in some salad dressings bother me. There is even malt in Hershey's chocolate miniatures. Couldn't figure out why I was itching, till I read the label. (I'm bad about having chocolate...next thing to wean myself off...)

[Dharma]

I think gluten intolerance is very real, and related to but not the same as celiac. A gluten intolerant person can get pretty sick eating gluten but never test positive for celiac. A person with celiac usually notices an immediate reaction to eating gluten, but a person like me who is intolerant will have ongoing symptoms that may even be delayed for days. Makes it harder for someone to realize they are intolerant, but when they stop eating it they feel WAY better!

[PFmommy]

Originally Posted by Dharma

I think gluten intolerance is very real, and related to but not the same as celiac. A gluten intolerant person can get pretty sick eating gluten but never test positive for celiac. A person with celiac usually notices an immediate reaction to eating gluten, but a person like me who is intolerant will have ongoing symptoms that may even be delayed for days. Makes it harder for someone to realize they are intolerant, but when they stop eating it they feel WAY better!

That's not true. I won't know for days if I've been glutened, unless it is a severe glutening. Also, Celiac is an actual food intolerance. I believe what you are talking about is gluten sensitivity. People can be gluten sensitive and never test positive for celiac. A person could also never test positive on a blood test, but have intestinal damage from gluten and still be diagnosed as a Celiac.

[sskennedy]

i have a severe allergy to gluten and stay away from sugar. if i eat it watch out!!! gas smells like a sewage plant, lol!!! i feel so bloated and lethargic i stick to atkins faithfuly

[ourugger]

I've posted on here a couple times about my suspicion of a gluten sensitivity. I’d been doing Atkins and basically eating all natural for a couple months which is when it occurred to me that all my GI problems were gone – no more IBS, etc. Things kind of suck right now because I'm on pain-killers from surgery which has slowed my digestive system tremendously, but things are still "moving" which was a surprise.

The other day my dad grilled out and I thought, “Screw it. I’m having grilled chicken on a whole wheat bun. While I’m at it, I’ll have a cup cake too.” Oh my, what a bad, bad decision. Later that night I had gas pains from hell and the next day sucked.

I don’t believe I have celiacs or need to be tested but I do believe that gluten is the devil

[Agee]

I've always thought that gluten intolerance is part of the continuum of celiac. To test positive for celiac through an intestinal biopsy you have to have a damaged intestine. If your celiac/gluten intolerance has just been triggered then you might not have a super damaged intestine. Or, if you're like me and haven't had gluten in over 4 years, your intestine might be back to 100& health.
I don't know if my understanding is medically sound, but it's always made sense to me.
I also will know withing 3-4 hours if I've been glutened. It happens so infrequently these days that the last time it happened I was really confused as to why I felt so amazingly bad...but then I figured it out.
Bottom line: if gluten makes you sick, don't eat it.
A

[msbaggypants]

Exactly! You don't need a diagnosis to realize you shouldn't have something.

There is rolls, banana bread, coffee cake, and sticky buns on the break table at work from the Easter bake sale. I have a huge red spot on my neck and 3 hives, and my mind feels like mud. I even ate dinner out in my car to avoid being back there! I'll be glad when I can get home.

[uclangel422]

Honestly it has taken a couple years for me to be ok to be around the stuff. I just know what it will do to me and i have to remember that. I used to get so resentful, and sometimes I feel a little sorry for myself at the monthly work parties.