Help - GI wants me to officially test for celiac

[Ann.without.an.e]

I saw a GI for the first time and he really thinks I have it and that my kids have it. Help me think this through. He’s saying there’s so much more to it than just not eating gluten and I need to do it for my kids so they can know and be tested too. But eating it is so miserable for me so I don’t want to trial it. Of my 4 kids - one has crohns, one doesn’t absorb b vitamins, one doesn’t absorb iron, and one is severely gluten intolerant (as am I). 
 

What do y’all think? I already eat like I’m celiac? Diagnosis won’t change my diet at all. 

Edited December 23, 2022 by Ann.without.an.e

[Jean in Newcastle]

Do you live celiac level gluten free?  (ie.  absolutely none in sauces, shampoos, medications including excluding anything "made in a facility that processes wheat"?)

Do you eliminate all possibility of cross contamination?  At home and out of the home?

I thought that I was gluten free and doing ok but when I went to that level. . .   things dramatically improved even more.

Did you ask him what he means as "much more to it"?  Does he mean the risk of cancer etc?  He can still screen and be aware of that possibility without the definitive diagnosis. . .

If you do decide to test you really need to go on quite a bit of gluten before the test.  As in dd was told to eat at least two servings of gluten (like a whole slice of bread or serving of pasta) EVERY DAY for six to eight weeks before testing.  Which was the blood test and also the definitive biopsy. 

[cintinative]

jean is right. It really depends on your level of caution right now. Do you have a separate toaster for gluten free items? Separate pans?  Separate colanders? When you eat out, do you confirm there is no cross-contamination?  Those are the kind of things you will need to think about.

Is the doctor thinking about a biopsy for each of your kids as well? For the kids, it may affect their growth (it did mine) if they have Celiac and are not on a strict diet.  

 

Edited December 23, 2022 by cintinative

[Clarita]

For my BIL his intestines were so damaged by the undiagnosed years that he actually needed to heal his, so he had to do 2 years of cutting out random foods (based on tests but they were food items he could add back to his diet later) to heal. He was a really extreme case. 

Also, there may be a chance that you are allergic to more than just gluten as well. 

[Jean in Newcastle]

35 minutes ago, cintinative said:

jean is right. It really depends on your level of caution right now. Do you have a separate toaster for gluten free items? Separate pans?  Separate colanders? When you eat out, do you confirm there is no cross-contamination?  Those are the kind of things you will need to think about.

Is the doctor thinking about a biopsy for each of your kids as well? For the kids, it may affect their growth (it did mine) if they have Celiac and are not on a strict diet.  

 

I'm fairly sure that my dd with celiac is shorter than she would be if she had been diagnosed earlier.  I base this (probably unscientifically) on the fact that her shoe size is much larger than it should be for someone her height!  (That and her growth chart leveled off earlier than it should have and was one of the things that led to celiac testing.)  But she didn't grow after cutting out gluten because I think that window closes at some point. 

[kbutton]

If he thinks your kids have it, then he should be having them tested (or refer them to a pediatric GI person). You could have it without them having it. They could have it without you having it.

Doing it for them is weird unless you already eat gluten, and it’s just a way to poke around and see what can be found out without making anyone miserable. But even then, they would need separate testing.

I have chosen to remain untested because no one in the family has a diagnosis, the kids are growing fine (one is underweight but always has been, height is fine, and weight is often as issue with his other diagnoses), and gluten is not my only intolerance. I have MCAS. Everything has the potential to be an intolerance. 

[Kanin]

DH just to a GI for the first time. She drew blood for a genetic test for celiac. Never heard of that before.

[cintinative]

2 hours ago, Jean in Newcastle said:

I'm fairly sure that my dd with celiac is shorter than she would be if she had been diagnosed earlier.  I base this (probably unscientifically) on the fact that her shoe size is much larger than it should be for someone her height!  (That and her growth chart leveled off earlier than it should have and was one of the things that led to celiac testing.)  But she didn't grow after cutting out gluten because I think that window closes at some point. 

I really wonder about this for mine. He was six when he was diagnosed. He is a little over 5'7" at 17. We don't think he will grow much more.  I just wonder if we lost at the beginning. He was always tiny but no one would listen to me that it seemed off. 

When did you cut gluten from your daughter's diet?

[Jean in Newcastle]

13 minutes ago, cintinative said:

I really wonder about this for mine. He was six when he was diagnosed. He is a little over 5'7" at 17. We don't think he will grow much more.  I just wonder if we lost at the beginning. He was always tiny but no one would listen to me that it seemed off. 

When did you cut gluten from your daughter's diet?

She didn’t get a diagnosis until she was 16. But we had been pursuing a diagnosis for 4 years before getting one. (Her primary symptoms were cardiac so doctors were not thinking of celiac at first). 

[Katy]

Have you taken the genetic test yet?  My understanding is that you can be diagnosed now from a combination of the genes & symptoms. I’m pretty sure I learned that from one of Dr Will Bulsiewicz, MD’s books, but I read a lot about fiber & gut health last year so it may have been somewhere else. 

[busymama7]

When my doctor ran a bunch of genetic tests on me post COVID to see if we could find anything to help, the celiac gene was one of them tested. I don't have it incidentally and I don't know how accurate it is for this kind of thing but I would ask before eating gluten for weeks for a regular test.  

[Jean in Newcastle]

https://nationalceliac.org/celiac-disease-questions/celiac-genes/

[katilac]

That's a tough one. 

I would have the gene test done first - if you don't have the genes, then it's 99% you don't have celiac. 

Ask him to elaborate on what he means by there being so much more to it than not eating gluten. What else? And, if you are not celiac, is there another diagnosis that it's important to look at?

How, specifically, would knowing you did or didn't have it affect your kids? Would it point to looking at certain other dx for them, beyond what they already have? 

 

[KidsHappen]

My doctors were able to rule out both Crohn's and Celiac based on blood work and a colonoscopy. There were/are concerns because I do not absorb enough nutrients from food. I have to supplement many vitamins and minerals.

[AngelaGT]

7 hours ago, KidsHappen said:

My doctors were able to rule out both Crohn's and Celiac based on blood work and a colonoscopy. There were/are concerns because I do not absorb enough nutrients from food. I have to supplement many vitamins and minerals.

I have a history of Crohn's and do not absorb nutrients well.  I have found that straight vegetable (no fruit) juicing has helped with absorbing some vital nutrients.  

[ktgrok]

On 12/23/2022 at 4:08 PM, Kanin said:

DH just to a GI for the first time. She drew blood for a genetic test for celiac. Never heard of that before.

If you don't have the genes you likely don't have celiac. But you can have the genes and not have celiac. 

20 hours ago, KidsHappen said:

My doctors were able to rule out both Crohn's and Celiac based on blood work and a colonoscopy. There were/are concerns because I do not absorb enough nutrients from food. I have to supplement many vitamins and minerals.

Yes...but to do the blood work you have to be eating gluten for quite a long time. Otherwise it isn't accurate. 

[KidsHappen]

57 minutes ago, ktgrok said:

If you don't have the genes you likely don't have celiac. But you can have the genes and not have celiac. 

Yes...but to do the blood work you have to be eating gluten for quite a long time. Otherwise it isn't accurate. 

I was.

[Harriet Vane]

14 hours ago, ktgrok said:

If you don't have the genes you likely don't have celiac. But you can have the genes and not have celiac. 

Yes...but to do the blood work you have to be eating gluten for quite a long time. Otherwise it isn't accurate. 

I thought the eating gluten concern was specifically as relates to the gi biopsy because it looks for damage. I don’t think the blood test carries that concern? 

[Jean in Newcastle]

1 minute ago, Harriet Vane said:

I thought the eating gluten concern was specifically as relates to the gi biopsy because it looks for damage. I don’t think the blood test carries that concern? 

The ttg test is for proteins that are only produced as a byproduct of inflammation and damage. So you need to be on gluten. I don’t know if there are any other blood tests. 

[Kanin]

22 hours ago, ktgrok said:

If you don't have the genes you likely don't have celiac. But you can have the genes and not have celiac. 

On 12/24/2022 at 2:34 AM, KidsHappen said:

Yup. Or a non-celiac gluten intolerance. Yay?

[ktgrok]

On 12/24/2022 at 11:34 PM, KidsHappen said:

I was.

Right, but OP is not eating gluten now. So blood test won't be useful. 

[Terabith]

Honestly, I think I would tell the doctor you aren’t willing to compromise your health for the sake of a diagnosis.  

[ktgrok]

19 minutes ago, Terabith said:

Honestly, I think I would tell the doctor you aren’t willing to compromise your health for the sake of a diagnosis.  

Yeah, I agree. 

If you are having any symptoms I'd want a scope done, to look for damage. But if there is no damage, why cause some to get the diagnosis, if you can just follow the same guidelines/treatment without it? We wanted an official diagnosis for DS because I didn't want to cut out gluten for him if we didn't need to. But you already are doing that, so yeah, I wouldn't add it in for the diagnosis. 

I'm also ONLy doing the blood tests for the other kids, periodically. If anyone in the family tests positive on that (after eating gluten ) I won't do the biopsy for them. Family history plus positive lab work would be enough for me. 

[KidsHappen]

3 hours ago, ktgrok said:

Right, but OP is not eating gluten now. So blood test won't be useful. 

Would an endoscopy though? They can look at the walls of your intestines and see if there is damage and that seems quicker and easier than a prolonged diet manipulation if you have the insurance for it.

[Jean in Newcastle]

12 minutes ago, KidsHappen said:

Would an endoscopy though? They can look at the walls of your intestines and see if there is damage and that seems quicker and easier than a prolonged diet manipulation if you have the insurance for it.

An endoscopy looks for inflammation and blunted villi in the intestines.  If you have been off of gluten, then your body will be healing that damage and they might not find it.  (If it was there to begin with, of course.) 

[Jean in Newcastle]

Re. the celiac genes.  Those genes mean that you have the potential to get celiac disease.  It does not mean that you have it (especially if you aren't having symptoms).  Celiac disease often has a trigger (like an illness or even something like pregnancy) that pushes the immune system past it's ability to handle gluten. 

[lewelma]

6 hours ago, Terabith said:

Honestly, I think I would tell the doctor you aren’t willing to compromise your health for the sake of a diagnosis.  

I completely agree. My dh and I are very worried that if I eat gluten for 8 weeks that I will never regain my health. I just cannot imagine how sick I would be. Right now my stomach is good, and I have a friend with celiacs who gut always hurts even though she is super careful. How do I know that I won't permanently injure my gut? Getting a diagnosis is not worth that risk. 

[ktgrok]

4 hours ago, KidsHappen said:

Would an endoscopy though? They can look at the walls of your intestines and see if there is damage and that seems quicker and easier than a prolonged diet manipulation if you have the insurance for it.

Nope - same as with the blood test, you have to be eating gluten for it to be accurate.