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Back To Eating Wheat

whitelacegal

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whitelacegal Contributor
whitelacegal
Posted

Does anyone know if you are diganosed with celiac and went back to eating wheat wouldnt you start having problems again with diarrhea? I went back to eating wheat because i had 2 different doctors and 1 said yes i have this and 1 said no, have been eating wheat for 3 months and no diarrhea but have problems with sores in mouth?

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KaitiUSA Enthusiast
KaitiUSA
Posted

If a doctor told you that you had it then I would say you have it. Doctors don't just diagnose celiac. Alot of doctors don't know what they should either so I think I would believe the one that said you have it.

You don't have to have symptoms with celiac and they do not necessarily have to come back. The point is the damage that it is doing will eventually catch up with you whether you feel the symptoms or not.

What tests did you have done that caused the doctor to diagnose you with celiac?

whitelacegal Contributor
whitelacegal
Posted
  • Author

kaitiUSA,

I had the endoscopy and colonscopy done and the biopsy on one of these tests came back Celiac disease, i cant recall which test said postive. After the doc retired that said i had celiac disease i went to a new doc, he gave me blood tests and these came back negative for Celiac so the new doc told me that i dont have it! I have been eating what i want since March but dont have diarrhea like i did when i was diagnosed, but i continue to have sores in the mouth.

KaitiUSA Enthusiast
KaitiUSA
Posted

If you had a endoscopy done and that was positive then you have celiac. Even if you had symptoms before and don't now that does not matter. Symptoms or not and when they appear or don't appear does not tell anything about celiac. You still are getting damage. I think that this doctor may not know as much about celiac...you were diagnosed because they found damage caused from gluten in your intestines. That doesn't change with time...gluten will always do that to a celiac.

Were you ever gluten-free at a point? That can interfere with results of tests. You could have been IgA defiecient and that could have cause blood results to come back negative when they otherwise would be positive.

key Contributor
key
Posted

I have to agree with Kaiti. It sounds like you have celiac if the biopsy was positive. The blood tests were probably negative because you weren't eating wheat at the time maybe, but it is still doing damage.

If I were you I would maybe even contact the place you were first diagnosed to see what your medical history says and what tests were done. Then I would also read alot of research on celiac on the computer so you can be aware of the disease. I have heard mouth sores are a symptom. Maybe someone else can be more help in that department.

Good luck,

Monica

tyki Newbie
tyki
Posted

My uncle does not specifically get mouth sores, nor does he get diarhea. However, within 8 hours of eating wheat, rye or barley, his face and arms break out in a rash of blisters.

Diarrhea and stomach pain are not the only signs of celiac. The mouth sores you have could well be the dermatitis symptom.

If the new blood tests were for the antibodies, you very well could have tested negative, because your time being gluten-free had allowed your body to heal.

I had the blood test done last fall, and my test came back negative, it would be real easy to tell myself see the test was negative I don't have Celiac. But the truth of the matter is, the intestinal problems I was having before the test had diminished significantly in the months just before the test, when my gluten intake had been diminished. And the week before the blood test, I ate gluten at every meal to test the theory, and by the time I went in for the blood work, I couldn't sit in the waiting room for more than 15 minutes without a trip to the bathroom.

When I showed the family doc the info about Celiac, he agreed to run the blood test, but he told me before I left the office, "The food challenge has already given you the answer. Your body cannot tolerate gluten, and it thrives when you eliminate gluten." So, I don't have a 100% iron clad diagnosis of Celiac, but I know my family history, grandmother couldn't eat wheat, uncle has Celiac, Dad has faced the fact that he has it to some degree, and we suspect many others in the family have it but won't admit it. I have a 1 in 20 chance of having the Celiac genes....and I have the symptoms. I have Celiac, I just don't have to pay $300 for a DNA test for it.

tyki

I'm in a special club in my family

I have Celiac

what a heritage.

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    • suek54
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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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