Help - Sos

[anniej55]

Hi All,

I was told by my Primary Care (in May) that I had celiacs; this was from bloodwork the GI did and I assumed that they conferred (they are colleagues and she got me in to see him). I never called the GI for test results because of what the PC told me. I had follow up appt with GI on Monday and he informed me that I DO NOT have celiac disease. Like, hello. I've been gluten-free since May/June. He's doing a biopsy in September to confirm the diagnosis, so I am (happily for now) eating normally.

My numbers?

Antigliadan AB Panel:

Antibody, IGA - 23 (normal 0-19 units)

Antibody, IGG - 54 (normal, 0-19 units)

Immunoglobulins (serum)

IGM 386 (normal 48-271)

IGA 418 (normal 81-463)

IGG 1337 (normal 694 - 1618)

He said my tTg was 3

I do have ITP, an autoimmune disease, and NASH (liver). Have been tested for leukemia & lymphoma and came back negative.

You all know more about this than I do - what gives? Did the gluten-free diet make me feel any better? I was never really sick. I will say that something I was eating that was gluten-free (muffins, etc) was causing me to bloat and have a rash; it has gotten significantly better in the past 3 days of eating.

I see my PC tomorrow and will run this by her, but I am more then a little reluctant to take her word on anything right now.

Thanks!

Ann

[Jnkmnky]

I am sorry to say, your numbers suggest you do Celiac. I'm sorry because your doctor sounds confused as well as confusing. This is no way to regain your health. Good luck.

[KaitiUSA]

Your numbers do suggest a problem with gluten. They don't come back elevated for no reason.

Can't really tell with symptoms..some people just never get symptoms with it.

What you could do is get tested for what you did last time and see if those levels that were high before went down since you have been on the diet.

[anniej55]

Isn't the Ttg the bottom line for diagnosis? (other then biopsy). And that was low, which is what he made his diagnosis on. And would the other numbers be high due to another autoimmune disease? Just curious.

Sigh. I dont know what to think/do now. This doctor was recommended as a celiac doctor.

Ann

[alisonsf]

Hi Ann,

So was your Ttg negative? That one's very specific for celiac disease. With the positive antigliadan numbers you could very likely have a problem with gluten, but not have celiac disease. There is another very specific test, endomysial Iga, that you might want to get once you've been back on gluten for a while.

I was in a similar position (test-wise) and had genetic testing to help rule out celiac disease since it was important to me to have a definitive diagnosis. The test came back negative and I am told I now have less than a 1% chance of having the disease. I suspect something's up, maybe an intolerance, maybe something even more exotic than celiac disease, maybe nothing. I'm back on gluten for a month or two and plan to get my Ttg and EmA testing done repeated. I've got some good doctors supporting me in all this.

The thing about the genetic testing is that something like a third of the population has the markers, so I would think the test would only be valuable for ruling out celiac disease. I understand that the biopsy is still the gold standard, despite the fact that many doctors will diagnose without it.

Good luck to you. The on again off again diagnosis is quite a roller coaster, isn't it?

Alison

[KaitiUSA]

The tTG is like the best test BUT it is specifically there to detect damage. The EMA is another good test and that is also used to detect damage. If there is none there yet then that would come back negative.

The IgA and IgG are not as accurate but they are still helpful and are used to detect the sensitivity to gluten. This is usually one of the first things you see positive.

[anniej55]

Hi Ann,

So was your Ttg negative? That one's very specific for celiac disease. With the positive antigliadan numbers you could very likely have a problem with gluten, but not have celiac disease. There is another very specific test, endomysial Iga, that you might want to get once you've been back on gluten for a while.

I was in a similar position (test-wise) and had genetic testing to help rule out celiac disease since it was important to me to have a definitive diagnosis. The test came back negative and I am told I now have less than a 1% chance of having the disease. I suspect something's up, maybe an intolerance, maybe something even more exotic than celiac disease, maybe nothing. I'm back on gluten for a month or two and plan to get my Ttg and EmA testing done repeated. I've got some good doctors supporting me in all this.

The thing about the genetic testing is that something like a third of the population has the markers, so I would think the test would only be valuable for ruling out celiac disease. I understand that the biopsy is still the gold standard, despite the fact that many doctors will diagnose without it.

Good luck to you. The on again off again diagnosis is quite a roller coaster, isn't it?

Alison

<{POST_SNAPBACK}>

Alison,

My tTg was 3 ... he said low, so no celiac. And yes, something is probably up. Maybe an intolerance. EmA - I'll have to look that up. I've had a battery of blood tests (9 vials at one time! - usually 3 or 4 is once every 3 weeks or so) so I'm sure I've been tested for everything.

I'm on gluten for the biopsy .... but I really don't eat that much of it normally. And having a problem with gluten and NOT having celiac disease is OK with me!

Ann

[PreOptMegs]

My doctor told me I didn't have celiac disease either because my biopsy came back negative. I KNOW I am gluten intolerant, though, which may be what you are. If I would have listened to my doctor, I would be eating as much "whole grain wheat" as possible because he diagnosed me with IBS. No offense to him, but I know my body and I know he is WRONG!!!!!!!!!I didn't lose weight when eating gluten, I gained it. Anyway, I am finally back to normal now that I am eating gluten-free

[anniej55]

My doctor told me I didn't have celiac disease either because my biopsy came back negative.  I KNOW I am gluten intolerant, though, which may be what you are.  If I would have listened to my doctor, I would be eating as much "whole grain wheat" as possible because he diagnosed me with IBS.  No offense to him, but I know my body and I know he is WRONG!!!!!!!!!I didn't lose weight when eating gluten, I gained it.  Anyway, I am finally back to normal now that I am eating gluten-free

<{POST_SNAPBACK}>

Have I missed something - why would gaining weight when eating gluten-free indicate anything? Other then the fact that I was hungry all the time, so I ate more.... and I ate worse. Potatoes to fill me up (fattening, I know) .... hate fruit, so candy ....

I was thinking IBS too, since I've always had a touch of constipation/diarrhea at different times in my life.

I just don't know which way to turn anymore.

Ann

[cdford]

Many GIs will not diagnose celiac disease without a positive biopsy. I had one who looked at the blood work and did not see a reason to put me through the biopsy because I was already gluten-free and doing so well. An insurance change forced me to another one who was adamant that it could not be called celiac disease because I had not had a positive biopsy done. It did not matter that I had accidentally gotten glutened and was sick as a dog because of it.

[Guest nini]

Have I missed something - why would gaining weight when eating gluten-free indicate anything?  Other then the fact that I was hungry all the time, so I ate more.... and I ate worse.  Potatoes to fill me up (fattening, I know) .... hate fruit, so candy ....

I was thinking IBS too, since I've always had a touch of constipation/diarrhea at different times in my life. 

I just don't know which way to turn anymore.

Ann

<{POST_SNAPBACK}>

I think she said she gained weight eating Gluten. NOT Gluten FREE. When I ate gluten I gained so much weight. I couldn't lose weight at all no matter how little I ate, because my body was reacting badly to the gluten. Since I've been gluten-free a little over 2 years now, I've lost about 80 pounds altogether and the only thing I'm doing different is eating gluten-free.

[anniej55]

It wasn't that he wouldn't diagnose it - he felt that the Ttg was too low to diagnose it, but would do the biopsy to double check. He was confident that it was not celiac disease ....

[anniej55]

I think she said she gained weight eating Gluten. NOT Gluten FREE. When I ate gluten I gained so much weight. I couldn't lose weight at all no matter how little I ate, because my body was reacting badly to the gluten.  Since I've been gluten-free a little over 2 years now, I've lost about 80 pounds altogether and the only thing I'm doing different is eating gluten-free.

<{POST_SNAPBACK}>

I stand corrected - she gained when eating gluten. Thanks for pointing that out. I gained when I ate gluten-free .... and got bloated. Now that I'm eating normally the bloating is gone ..... leave it to me to be weird.

[Guest nini]

you may have other food intolerances. It is worth keeping a food diary and tracking any and all reactions (or none) from whatever you eat. You may see a pattern start to emerge. Just a thought.

[anniej55]

you may have other food intolerances. It is worth keeping a food diary and tracking any and all reactions (or none) from whatever you eat. You may see a pattern start to emerge. Just a thought.

<{POST_SNAPBACK}>

I had actually been considering doing that before the GI doc told me it wasn't celiacs. It was definately something gluten-free doing it to me .... I was eating the english muffins and corn muffin (George's). Rest of the time it was meat, potatoes, etc. Normal stuff. Feel way better now .... either that or I'm trying to convince myself of it

[Guest nini]

you could be allergic to corn. It's used in a lot of gluten free products. Corn is also very hard to digest.

[drjmarkusic]

The absolute diagnostic tool is the EGD and the biopsy of the villi. If this hasn't been done I would suggest it be scheduled.

[anniej55]

The absolute diagnostic tool is the EGD and the biopsy of the villi. If this hasn't been done I would suggest it be scheduled.

<{POST_SNAPBACK}>

Hi,

I have a biopsy scheduled for September. I don't know about the EGD - it was mentioned. I haven't had any problem eating normally ... but I know that it might not be affecting my stomach at this point in time. I think my biggest mistake was taking my primary care's diagnosis and not calling the GI for the blood results (in May). Come to find out, she didn't even know what a tTg was ....

thanks for the advice. I'll let you all know what the results are.

Ann