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Should I Have An Endoscopy?

mamato4

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mamato4 Rookie
mamato4
Posted

Hi All,

I am new here, so I am just starting out on learning about Celiac. I was given a positive blood test result over the phone from my Dr yesterday. I am waiting on a referral to a gastroenterologist. Here's my question: Can you help me think through the pros and cons of going through with the biopsy? Part of me thinks that a lifetime of symptoms that fit the dx is good enough. I temporarily took myself off gluten recently and felt AMAZING for the first time EVER (I'm 32). I went back on it and had shockingly severe symptoms within an hour and for almost a week. I'm off again and am starting to feel normal. The other part of me thinks that I should find out the extent of my intestinal damage (and IF I have any), so that I'm not tempted to cheat when the gluten-free diet gets hard to stick to.

Any advice? I'm torn. I don't want to go back on gluten for the test, but I really do want to know. I should add: I have 4 kids who I'd like to have tested. Blood work will be happening soon. My 8yo has had chronic diarrhea since birth and has an ADHD diagnosis, though I've always suspected food as a correlation.

TIA for you help.

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beachbirdie Contributor
beachbirdie
Posted

Hi All,

I am new here, so I am just starting out on learning about Celiac. I was given a positive blood test result over the phone from my Dr yesterday. I am waiting on a referral to a gastroenterologist. Here's my question: Can you help me think through the pros and cons of going through with the biopsy? Part of me thinks that a lifetime of symptoms that fit the dx is good enough. I temporarily took myself off gluten recently and felt AMAZING for the first time EVER (I'm 32). I went back on it and had shockingly severe symptoms within an hour and for almost a week. I'm off again and am starting to feel normal. The other part of me thinks that I should find out the extent of my intestinal damage (and IF I have any), so that I'm not tempted to cheat when the gluten-free diet gets hard to stick to.

Any advice? I'm torn. I don't want to go back on gluten for the test, but I really do want to know. I should add: I have 4 kids who I'd like to have tested. Blood work will be happening soon. My 8yo has had chronic diarrhea since birth and has an ADHD diagnosis, though I've always suspected food as a correlation.

TIA for you help.

HI and welcome to the forum.

You are going to receive answers from all over the spectrum on the question of scoping vs. not scoping. You'll have to be the final judge.

If you really need a firmer diagnosis to make you stay on the diet, maybe scoping is worth it. If you need a diagnosis for some kinds of tax advantages or for disability services, it might be worth it.

On the other hand, sometimes celiac damage is missed in the biopsy and then docs will say you don't have celiac even if you do. Damage can be patchy, and a lot depends on the skill of the person taking the biopsy, as well as the pathologist who reads/interprets the slides.

If you are off gluten for any length of time, you are going to skew the results. Your intestines will start healing and you WILL get a negative biopsy. You must be glutening for the scope to give accurate results.

I think the dramatic response to dietary change is a huge factor, and you could consider that answer enough.

Do you happen to have a copy of your test results? Do you know which blood tests they did?

veronika Newbie
veronika
Posted

If your doctor will diagnose you with Celiac's based on the positive bloodwork then there is no huge reason to get the scope done IMO. The only reason you would do it at that point is if you want to see the extent of the damage, or to be super positive that the diagnosis is correct (although I hear the rate of false positive is really really low).

If your doctor will not diagnose you just based on the blood work (which would be strange, but does happen), or if they are worried about the extent of damage, I would have the scope -- no question. There is a tax credit for the cost of gluten-free products in Canada too, which is nice, but you will need a diagnosis in order to claim it. Hopefully if you decide you have the scope done it doesn't take too long to get you in, so you don't have to be on gluten for months. The scope is covered under provincial health care, in most cases, so there is no worry about the cost and the actual procedure is pretty easy to deal with.

veronika Newbie
veronika
Posted

So I re-read my post and I sound retarded... thought you were Canadian, sorry about that. I'm going to blame the brain fog on this one :blink: .

mamato4 Rookie
mamato4
Posted
  • Author

Thank you for responding! I requested all my lab work to be mailed...I got copies in the mail today of all the tests she ran EXCEPT the Celiac panel. Arg. Anyway, I asked her twice to tell me what it said. All I know is that there were 6 antibodies tested and the only one that was positive read tTg- iGg. She said it was an 8 and was on the high end of weakly positive. Does that help? As soon as I actually get the correct printout I'll post it.

beachbirdie Contributor
beachbirdie
Posted

Thank you for responding! I requested all my lab work to be mailed...I got copies in the mail today of all the tests she ran EXCEPT the Celiac panel. Arg. Anyway, I asked her twice to tell me what it said. All I know is that there were 6 antibodies tested and the only one that was positive read tTg- iGg. She said it was an 8 and was on the high end of weakly positive. Does that help? As soon as I actually get the correct printout I'll post it.

I see now why the scope might be recommended. The TtG IgG can be elevated from some things besides celiac, and the scope should show damage to the intestine. Some docs won't diagnose if that is the only elevated antibody. That said, there are several here who only had positive TtG IgG, and yet their scope showed a LOT of damage.

That antibody is a definite sign that you have autoimmunity going on, it is an antibody in which the body is attacking itself.

mamato4 Rookie
mamato4
Posted
  • Author

Thank you. Here are my full results. Vit D and TSH were normal.

WBC 3.9 Range 4.0-10.5

Deamidated Gliadin , IgA 2 Range 0-19

Deamidated Gliadin IgG 3 Range 0-19

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 118 Range 70-400

tTG, IgA <2 Range 0-3

tTG, IgG 8 Range 0-5

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