Newbie Questions - can you develop Celiac's after a negative result?

[Mirrasi]

My 12 year old has had GI issues since birth. He's had blood tests and 2-3 years ago had a colonoscopy. All tests and biopsies came back negative for Celiac's. He had inflammation and pictures where all bumpy but we didn't really get any answers. 

Is it possible he could have Celiac's and have had a false negative on the biopsy. He has soooooo many symptoms. I feel that it's some sort of autoimmune because he has "flare ups". He will be fine on his meds (Prilosec and Miralax) for months, and then we have months of hell. 

Usually his issues are GI distress. Diarrhea or constipation always, severe nausea, gas, cramping. He can sit on the toilet for 3-4 hours straight at times :(.  Now adding to that over the last year he can't focus or concentrate and he gets very weak and tired. You can see it when it happens, his whole body just gets droopy and he's so weak he has trouble walking. 

 

We have never tried going gluten free since it's so complicated. We just lost his insurance too. I can put him on the Florida medicaid insurance but trying to find a medicaid doctor to actually listen is hard. So my thought is this..

..

 

Try gluten free and see if it helps. Maybe order some blood work on my own it through internet and pay out of pocket. If anything comes back positive, I can at least show that to the medicaid doctors and hopefully get the referral we need. 

 

The only other thing to ever come back abnormal was his TSH was high so possible starting of hypo thyroid. 

 

Thoughts?

[squirmingitch]

Yes, one can present with celiac at any time in life. You said a colonoscopy...... that can not dx celiac. An endoscopy is what they use. They biopsy the small intestine. Get copies of the labs & pathology report. The small intestine, when splayed out flat, is the size of a tennis court. it is easy to miss damage with that kind of a surface area. That's why a minimum of 6 biopsies should be taken, preferably 8. 

You could pay out of pocket for blood tests but he HAS to have been eating gluten - a slice of bread, bowl of pasta or a couple crackers, EVERY day for 12 weeks prior to the blood tests.

When one goes gluten free & then resumes eating gluten for testing it's called a gluten challenge. Almost all celiacs get much, much more severe reactions to consuming gluten after having been gluten free & many are so sick they are unable to complete the challenge.

[cyclinglady]

5 hours ago, Mirrasi said:

My 12 year old has had GI issues since birth. He's had blood tests and 2-3 years ago had a colonoscopy. All tests and biopsies came back negative for Celiac's. He had inflammation and pictures where all bumpy but we didn't really get any answers. 

Is it possible he could have Celiac's and have had a false negative on the biopsy. He has soooooo many symptoms. I feel that it's some sort of autoimmune because he has "flare ups". He will be fine on his meds (Prilosec and Miralax) for months, and then we have months of hell. 

Usually his issues are GI distress. Diarrhea or constipation always, severe nausea, gas, cramping. He can sit on the toilet for 3-4 hours straight at times :(.  Now adding to that over the last year he can't focus or concentrate and he gets very weak and tired. You can see it when it happens, his whole body just gets droopy and he's so weak he has trouble walking. 

 

We have never tried going gluten free since it's so complicated. We just lost his insurance too. I can put him on the Florida medicaid insurance but trying to find a medicaid doctor to actually listen is hard. So my thought is this..

..

 

Try gluten free and see if it helps. Maybe order some blood work on my own it through internet and pay out of pocket. If anything comes back positive, I can at least show that to the medicaid doctors and hopefully get the referral we need. 

 

The only other thing to ever come back abnormal was his TSH was high so possible starting of hypo thyroid. 

 

Thoughts?

I think before you start ordering tests or going gluten free,  you should obtain all his medical records as SquirmingItch advised.    Find out exactly his thyroid results (TSH, etc.).  Then see exactly which celiac blood tests were given.  What did the pathologist report in the biopsies?  Once you have than in hand, you can determine whether or not he had a complete celiac blood panel (or just the TTG which is good but does not catch all celiacs) or if her had an endoscopy or colonoscopy and the correct number of biopsies taken.  

A gluten free diet can help a celiac, but you need to find out if he actually has celiac disease.  If ruled out, look to other issues like Crohn’s or EOE, or whatever!)  I thought for sure that my niece had celiac disease, but she has Crohn’s instead.  

Those medications he is taking can have long-term side affects and getting off them can cause a rebound effect.  Something that should be discussed with a doctor and even a pharmacist.  

Then think about consulting with another doctor and pay cash for the visit and take all those records with you.  He or she maybe able to help you.  

Imhope your son feels better soon!  

Make it a priority for him to get medical insurance through the state.  Do it ASAP!   He sounds pretty sick.  

[Dzteach]

Absolutely YES!  I had it for 30+ years with multiple tests before it showed positive in my blood work or biopsy. Then when I was finally dx the blood work was the highest my immunologist ever saw. They told me to have my kids blood tested every 2-3 years.