Questions about health

[lucky97 3]

So my gastroenterologist tells me my blood levels are "slightly abnormal" and he says having an Transglutaminase IgA reading of 21 is also "slightly abnormal." So I assume this means I'm still getting a little gluten SOMEWHERE after starting my gluten free diet in November 2010. He also said the blood readings and the celiac are "two separate issues." Dumb me, I didn't press him so I'm confused.

Then my primary care doctor looked at the same 11 blood tests a couple days after (for my regular physical) and said he (my regular doctor) would consider the blood work "normal" and to give things "a little more time," I assume to readings to drop back into the normal range.

I do remember seeing an IgA reading on one of the blood tests last May and it was 46...and now it's at 21. Does this IgA reading reflect the healing of the intestines over time (like the condition is disappearing) OR is it an instant indication that I'm still ingesting gluten somewhere.

Plus I don't understand why the specialist would tell me my blood reading and the celiac condition are "separate issues." I had been drinking hard cider as my only alcoholic beverage of choice up to that appointment, after which the specialist asked me to refrain from all alcohol for about 4 months (till my next scheduled blood tests/follow-up appt).

The only things I see that are out of the regular range in the blood tests are (and there were a lot of tests): RDW-CV 19.1 (15.0 is the high normal), Platelet Count 149 (150 is low normal) and Mono% 14.7 (12.0 is high normal). The specialist has told me my liver levels are "spot on." I had a serious liver problem develop out of the blue, which is what started me on my road to needing this forum in the first place.

I feel fine, my weight is stable but I'm about 20 pounds lighter than I was pre-celiac. I suspect most of that was beer weight!

I know that's a lot of information but it's been on my mind an awful lot. If I'm still getting gluten I can't imagine where; I read a lot about it and am strict about the diet. If there's something else he might be monitoring regarding my blood work, I want to understand that, too.

[cavernio 9]

Wish I could be of more help, any info I give you is what I can glean from online sources.

Firstly, IgA is not the same as transglutiminase IgA. http://americanceliac.org/celiac-disease/diagnosis/ tells the difference; transglutiminase IgA is probably best to be known as tTG. So if you're only seeing part of the tests, or the doctor's mumbling the results, you don't remember exactly what they said, etc, there's multiple measures involving IgA. So, this probably is just complicating things for you, not clarifying them...

In any case, when I read up about antibodies in general online, you'll keep the ones you have for life, in some quantity or another. So the fact that you have some isn't unusual at all. It's really hard to find how long antibodies will stay elevated after the thing that causes them to elevate is gone.

http://www.endfatigue.com/health_articles_f-n/Infections-treating_hidden_viral_infections_cfs.html

Not sure I like everything on this page, but it does go into an explanation about IgG and IgM. IgG ones will remain elevated forever, while apparently IgM ones won't. Obviously IgA is neither of these, but it might not be so cut and dry as to how long they will last after eating gluten.

People and doctors say it takes awhile for celiac disease to heal properly from it, and if you ingest gluten even 6 months ago, you still might be having effects of it. That seems like an indication that elevated levels of IgA or tTG could easily last for 6 months. However, it's not clear to me if that's because of the antibodies, or if it takes intestines that long to heal once being attacked, or if its that long to regain vitamins or something.

I don't understand how/why IgA or tTG wouldn't be related to your celiac, however, I also don't know if they're markers for any other disease. I do know that some form of IgA is also involved in a specific kidney problem...I'm assuming it's again another slightly different form of IgA though, hopefully unrelated to celiac disease, but I don't know. I suppose they do also say you have to be eating gluten everyday for quite awhile for the blood tests to show up positive, so that probably means something too.

I really can't answer if this means you've eaten gluten recently or if it's residual. However, I would take it as a good sign that it's down, I would ask the GI next time how IgA levels might be related to something else besides celiac disease. Also, the fact that you had liver problems due to celiac disease means you must have had it pretty badly (I haven't had liver issues yet I've shown clear celiac symptoms for 6 years, and I suspect I've had it more like 12 or 13), so maybe that just means your personal IgA and tTG hang around longer than they do for someone like me.

If you are still not feeling well since going gluten-free is when I would be concerned about it.

[lucky97 3]

Hello and thanks for the reply.

My liver problem 16 months ago was significant and what started everything... over about a month's time I had been COMPLETELY exhausted, lost 25 pounds and went jaundice. Spent five days in the hospital while they took all sorts of pictures but found no tumors in the places they looked. I was on complete bed rest for five weeks. It looked like a hepatitis but I was negative for all of those. The specialist has repeatedly told me how unique and difficult my case was to properly diagnose because it looked like a liver autoimmune disorder but, once he suggested I "try" a gluten free diet, the scary bad readings all started to recover...then the liver and intestinal biopsies and all to confirm celiac. He said he was very close to diagnosing something very different which would have put me on steroids maybe for life...and in the end would not have addressed the gluten intolerance anyway.

What I'm left with now is the subject of this thread, some blood readings that are "slightly abnormal" after about 16 months. But I truly feel fine, I'm no longer anemic and, although I'm thinner than I used to be (since there's no more beer weight) the only indication there is something wrong is this doctor telling me there is. But not alarming enough for him to follow up less than every four months.

Since January (the follow-up visit I've been referring to) I have eliminated I think the last possible sources of hidden gluten or cross-contamination in my diet...AND all alcohol to try and put the blood work back into "spot on" territory for my next follow-up in May.

I'm single and ate out a lot at a BW3 across the street...I ate only their couple gluten free offerings but I think I was getting cross-contaminated and stopped eating there. I cut out ordering bacon also when eating out for breakfast, I thought that might also be a source of hidden gluten. We'll see in May if I was right. Otherwise I'm strict and eat the things I've found on this board or whatever is labeled gluten free.

I just want to get that "two thumbs up" follow-up appointment I haven't had yet. Then I guess the last step is the doctor is going to do one more biopsy to make sure the villi have recovered, did I understand that right? I think he said we're not ready for that yet.

I'm the first person in my family with Celiac; nobody knew anything about it before me. They know plenty now.