Celiac Blood Tests Were Negative

[marissa088]

I got my blood work results in the mail yesterday. Everything that was tested was negative for Celiacs disease. I was happy, but also let down because I have no clue what is causing my problems. I am having chronic canker sores. I have three in my mouth right now. They are so painful that I just want to pull my hair out. I am still having chronic constipation that will turn into diarrhea and then go back to constipation.

I decided a few days ago to try to eliminate as much wheat from my diet. I usually eat a lot of pasta and/or bread because I like it, so it was weird not eating those things. Today when I woke up, I didn't feel fatigued like I usually do in the mornings. I'M NOT BLOATED! My stomach is actually flat. I weighed three pounds less than I usually do (probably water weight?) and I had a normal bowel movement this morning! I'm really happy except for the fact that I still have my canker sores.

So, I've read through other posts and found out there is a difference between gluten intolerance and celiacs disease. I'm wondering if I need allergy testing done to figure out if I'm gluten intolerant or just do the elimination diet and take the wait and see approach? I was also wondering if anybody else knows what can cause chronic canker sores that I should be tested for? So far I know it's not celiac or the herpes/cold sore virus.

Thanks!

Marissa

[samcarter]

I got my blood work results in the mail yesterday. Everything that was tested was negative for Celiacs disease. I was happy, but also let down because I have no clue what is causing my problems. I am having chronic canker sores. I have three in my mouth right now. They are so painful that I just want to pull my hair out. I am still having chronic constipation that will turn into diarrhea and then go back to constipation.

I decided a few days ago to try to eliminate as much wheat from my diet. I usually eat a lot of pasta and/or bread because I like it, so it was weird not eating those things. Today when I woke up, I didn't feel fatigued like I usually do in the mornings. I'M NOT BLOATED! My stomach is actually flat. I weighed three pounds less than I usually do (probably water weight?) and I had a normal bowel movement this morning! I'm really happy except for the fact that I still have my canker sores.

So, I've read through other posts and found out there is a difference between gluten intolerance and celiacs disease. I'm wondering if I need allergy testing done to figure out if I'm gluten intolerant or just do the elimination diet and take the wait and see approach? I was also wondering if anybody else knows what can cause chronic canker sores that I should be tested for? So far I know it's not celiac or the herpes/cold sore virus.

Thanks!

Marissa

Marissa,

It is possible to have negative blood panels and still have celiac disease or gluten intolerance. I tested negative on EMA (the only test my dr had done) but I have responded positively so far to a dietary change. It sounds like you are having a positive response to diet, which could mean you either have celiac disease that the blood panels missed, or you are gluten intolerant.

An allergy testing for wheat will not determine whether you are gluten intolerant. Allergy to wheat is different from gluten intolerance. You could order stool testing from Enterolabs--these are said to be much more sensitive to gluten intolerance than the blood panels are--and you do not have to be eating gluten to have those done. Just do a Google for Enterolab. Many people on this forum have used enterolab after negative blood tests and found they were gluten intolerant.

As for the canker sores, I get those when I am low on Pantothenic Acid. It's a B vitamin, and if you have malabsorption due to gluten intolerance or celiac you can be low on that. You can buy supplements and take them--it has always worked for me. It still takes time for the sores to go away, but they go away faster for me when I take the Pantothenic Acid. Ask at a health food store.

[marissa088]

Marissa,

It is possible to have negative blood panels and still have celiac disease or gluten intolerance. I tested negative on EMA (the only test my dr had done) but I have responded positively so far to a dietary change. It sounds like you are having a positive response to diet, which could mean you either have celiac disease that the blood panels missed, or you are gluten intolerant.

An allergy testing for wheat will not determine whether you are gluten intolerant. Allergy to wheat is different from gluten intolerance. You could order stool testing from Enterolabs--these are said to be much more sensitive to gluten intolerance than the blood panels are--and you do not have to be eating gluten to have those done. Just do a Google for Enterolab. Many people on this forum have used enterolab after negative blood tests and found they were gluten intolerant.

As for the canker sores, I get those when I am low on Pantothenic Acid. It's a B vitamin, and if you have malabsorption due to gluten intolerance or celiac you can be low on that. You can buy supplements and take them--it has always worked for me. It still takes time for the sores to go away, but they go away faster for me when I take the Pantothenic Acid. Ask at a health food store.

Thanks for responding. I had a stool sample done through my doctor's specific lab, I don't know the name offhand. I am waiting for those results. I will look into Enterolab though. I've never heard of Pantothenic Acid either. I will definitely look into this. Thanks!

[Amyleigh0007]

marissa088- That sounds like my story. All of my tests have been negative yet I have had a very positive response to the gluten free diet. My advice is to do the diet. It is so worth it. I feel better than I have in years.

[babysteps]

marissa088- That sounds like my story. All of my tests have been negative yet I have had a very positive response to the gluten free diet. My advice is to do the diet. It is so worth it. I feel better than I have in years.

Marissa 088 - I agree with Amyleigh. You know your body better than the testing lab

[veggienft]

If ingesting gluten makes you feel bad then stop ingesting gluten. Your health depends on it.

If you need a name for that, it's called celiac disease.

..

[Tim-n-VA]

I will disagree that an allergy test will not find gluten intolerance. It might just seem semantics but gluten intolerance is used in a lot of different ways, many times meaning "something bad happens when I eat gluten".

If all you want is to feel better - and that is a personal decision - and gluten makes you feel bad, stop eating it (as stated before). However, if you are one of those people who want to know what is going on in your body (i.e. auto-immune verus allergy versus digestive), it is terrible advice. There two to three threads per week on this board from people who cut out gluten on their own and are now trying (or thinking about) adding gluten back to get definitive tests.

Bottom line - decide what level of certainty you want from conventional medicine before you remove gluten. Either decision is correct and up to you. Most people report the most severe symptoms after consuming gluten after being gluten-free for a while.

[nora-n]

But usually people with other genes than DQ2 or DQ8 do not manage to get an official diagnosis, although they may be even more sensitive to gluten than the DQ2 and DQ8, who mainly have the reactions in the intestines.

For instance DQ1 have more neurological symptoms, and others have more immunological problems and all kinds of gluten related dieseases, without showing the typical villi damage.

I wonder if it might be easier to do a gene test and only try to get a celiac diagnosis if the genes are DQ2 or 8.

i am aware of that there are a number of Dq1 and DQ7 and DQ9 that are officcially diagnosed, but someone posted here a couple of months ago that there are only six officially diagnosed DQ6 (= DQ1) celiacs out there in the U.S. There re a few in other countires too. But DQ1 is so common that the chances of an official diagnosis are small if the blood work is not highly positive.

A number of DQ1 have posted about all the improvements after going gluten-free, and Dr. Hasjivassiliou writes that 20% of his gluten ataxia patients are DQ1.

nora