Discussions By Condition: Digestive conditions

Trying a glueten free diet...any Celiacs out there?

Posted In: Digestive conditions 5 Replies
  • Posted By: mainesgem
  • December 6, 2006
  • 01:11 AM

Hi there,
I have been having the following symptoms (some for months/some
for years):

Migraines, menorrhagia (heavy periods), major, constant fatigue, tachycardia (I have 2 take cardiazam for it), periods of bradycardia, weight gain (I was always super thin all of my life until three years ago.), rare spells of complete weakness-feeling like I am going to die (My BP goes sky high, my HR goes high, and I shake badly.), I am thirsty all of the time-I probably drink over 2 gallons of water a day!, and really bad gas pains almost all of the time. Sometimes I get so much gas-I can't even move due to severity of the pain. I was living on GasX everyday, several times a day.

I posted to another board w/in this forum-the undiagnosed one. Anyway, some people came back and said that maybe it was celiac disease.

So, after googling celiac disease, I am TRYING a gluten free diet. I started yesterday morning. Yesterday I noticed a little gas/bloating-but a major reduction in my normal amount of gas. Today-no gas or bloating!!! Praise God!!!

Although I am feeling very nauseous. I have some sort of chest cold and I do not know if the nausea is due to the cold bug that I have or from switching to the gluten free diet.

Can any celiacs out there relate there experience of switching to a gluten free diet and how and when it changed their symptoms???

It would be great to know if this gluten free diet is working and/or is going to work! I plan on sticking to this "diet" for two weeks at least and then evaluating how things are with my body.

Thanks so much and God Bless!

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5 Replies:

  • I have never tried a gluten free diet but Celiac.com has a wonderful message board and gluten-free recipes for you to help you along. I tried them out when I thought I was going to have to put my son on a gluten free diet. Everyone there is pretty friendly. I wish you luck.
    lynnwalden 20 Replies
    • December 6, 2006
    • 04:41 AM
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  • Dear Lynn,Thanks for the info-I'll give them a try with this question...J.
    mainesgem 2 Replies
    • December 6, 2006
    • 06:55 PM
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  • Hi there! Just wondering how the gluten free diet is going??? I was thinking of doing that, seeing as though the doctor doesnt think I have celiac (which may be true, but it could be a gluten intolerance or something!!! I have all the symptoms!) I heard that you shouldnt try a gluten free diet until you have been diagnosed, as it may heal your intestines, and then when it comes to being tested, they say you're fine so you dont need to go gluten free!!! But seeing as though they dont think I have it, I dont see the harm in trying it and seeing how I feel!!!So please, if you can, just let me know how it has been and how you are feeling!!!Thanks.
    kiwi88 11 Replies
    • January 24, 2007
    • 11:21 AM
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  • The biggest risk of trying the diet and then not being diagnosed is how well you can stick to it. In some respects, its better to not be diagnosed if money is a problem - some insurance companies will cut you off or raise rates if you are known to have Celiac's.For me, I noticed improvement almost immediately. The thing is though, you can't just stop eating bread and call it gluten free. Gluten can be found in ingredients such as: citric acid; broth; binder; natural flavors; modified food starch; hydrolized vegetable protein; malt; spices; and many others. It is important to research all prepared foods and contact the producer if information can't be found elsewhere.The diet could be beneficial to people who don't have a gluten intolerence simply because of the amount of processed junk & fast food that it eliminates. In this case, you may feel better after starting it, but not actually need to avoid all gluten. You may just need to eat healthier in general.For me, I felt like a brand new person after 3 days on the diet. I consider myself lucky that my symptoms are so bad. It makes compliance much easier because of how terrible I feel for 3-4 days afterward. Some people have very minor symptoms. I imagine that such a difficult diet would be almost impossible to stick to if the symptoms are small and there is no official diagnosis. But, even if the symptoms are small, even a small amount of gluten has been shown in lab studies to harm the digestive system.The other thing is, once you stop eating gluten, if you do have an intolerence, any gluten you eat after cutting it out will effect you WORSE. Maybe this is because the body is healing and more sensitive, maybe its because you have something healthy to compare your feelings to. It makes the "gluten challenge" (The act of intentionally consuming gluten after a period of a gluten-free diet in hopes of getting an official medical diagnosis) very difficult. Depending on the doctor, he/she may require up to 6 months of intentional gluten consumption before testing.Withdrawl is a normal feeling lasting 2-6 weeks. Gluten produces a small amount of chemical that is similar to morphine and exorphins. People with an intolerence produce more of this chemical so they experience more withdrawl.Celiac is a multi-symptom multi-system condition. It is known as a copy-cat because it mimics many other known conditions. For me, my symptoms were chronic digestive pain & diarrhea, dehydration, low energy levels, uncontrollable sweating, weight gain, intense scalp & face itching, sore/stiff joints, and an awful smell that followed me everywhere. But the symptoms are completely random and case specific it seems - some people have constipation and weight loss - or even no digestive symptoms and a normal weight. Other than the itching (which can take 10 years to fully heal) my symptoms are almost completely gone 10 months later. I lost 40+ pounds, I sleep half as much as I used to, and I have twice as much energy.Yes, it is true you can have a gluten intolerence and yet not match the medical definition of Celiac's Disease. Celiac's diagnosis is based on the amount of damage that has been done to the small intestines. The longer an intolerent person stays on gluten after the symptoms begin, the better the chance of qualifying for Celiac's disease. There is a blood test that shows if your body is making antibodies to gluten - some studies suggest up to 1 in 7 people produces this antibody but the medical community says most of these cases are too minor to suggest a gluten-free diet. I disagree with that conclusion and I think it has something to do with wheat being one of the top legal crops in America.
    Azaral 152 Replies
    • January 24, 2007
    • 00:48 PM
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  • Hi there, I don't have Celiac's but my mom, maternal grandparents, and more relatives than I care to count all have it. (In addition, my daughter is being tested for it.) Personally I would like to be tested (as everyone looks at you a little crazy for going on such a wild diet with no "medical proof"), but on the other hand what are they going to really do, tell me not to eat gluten. Since my little girl is at a high risk for it, and I'm pregnant we have picked up the diet in the last few days as well. (She's already had her test run.) I think the nausea may be caused by the new flour, although my daughter today was the first day my daughter hasn't thrown up since she caught Rotavirus. It went away for me when I ate, of all things, a baked potato with butter. It may seem odd, but hey it worked, then again it may just be because I'm pregnant. Oh, also, my mom doctor has told her that if you aren't tested, but adopt the diet most doctor's won't treat you any differently. Even if you are tested, you still have to ask them every time they prescribe something to make sure it has no glutens. Also, if you do get hospitalized and live in a town smaller than Houston or Chicago don't expect them to even know what a gluten-free diet looks like. When my family goes in to the hospital, we wind up cooking all their meals for them. It just safer that way. Also, get ready to eliminate all resturants. there aren't any that I know of that offer any gluten-free foods.Anyways, I don't know if this will help, but I hope it does. Good luck on your diet, and find a good support group. And don't worry about not being diagnosised, lots of people who go don't officially have Celiac's. After all, if you have all the symtoms and the only fool proof test is a $3,000 biopsy, and the diet makes you feel better, why not take it up?
    Anonymous 42789 Replies
    • February 2, 2007
    • 04:33 AM
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