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A Few More Questions

OHtummytroubles

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OHtummytroubles Rookie
OHtummytroubles
Posted

The Cleveland Clinic has agreed to retest my Celiac panel since mg ttg iga was a 16 (my request for them to retest). I also want them to test a few basic vitamins such as the B vitamins and D. My concerns are as follows:

1) Should I even bother re-testing? Are you only technically Celiac if you have a high number such as 80 or 100+ on a ttg iga? I do not want to be grasping at straws or looking for a diagnosis. Just thought it was weird that it was even at a level 16. i really only eat breading if it is on a chicken nugget and do not eat pasta or other bread daily. I wanted to retest after actually consuming a bit more gluten to see if the figure would change. But then I wonder....people who are say a ttg iga of 80 who go gluten free retest their levels after 6 months or so and hope to see them go down. Typical reasons for them not going down are possible cc - right? If cross contamination of a few crumbs could skew test results for ttg iga - then me eating only breading on chicken nuggets should be enough if I was truly Celiac...right? Why even do a gluten challenge if true Celiacs really would react to even crumbs in their ttg iga levels?

2) How much bread product/pasta should I eat daily and for how long before I retest at Cleveland Clinic? Keeping in mind that right now I do eat some gluten...and have been for a few months (just not really daily or large quantities).

3) Does anyone else get terribly dry elbows that cannot be moisturized??? I literally use lotion maybe 5 times a day (Nivea cream...Jergens cherry almond...various kinds to try and heal them), but they stay dry/cracked/irritated. This is the only area that does this on me, but it gets very bad to where clothes brushing up against them hurts. Kind of a pain when you have to be at work 8-5 at a busy University.

OK...enough of my rant/questions. I am just very perplexed right now. Everything points to Celiac for me....but I like to have rational answers for everything :)

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cassP Contributor
cassP
Posted

you need to not only retest your TTG Iga

but you need other tests!!!:

Total Iga Serum

TTG Iga AND Igg

Antigliadin Iga AND Igg

Endomysial Antibodies.

also, the word on this forum- is that you need to be eating AT LEAST 4 slices of bread a day for AT LEAST 6 weeks.

TTG Iga is ONLY 1 piece to the puzzle...

mine was lower than yours..

also if your Iga serum is LOW- then your Iga tests may be invalid/innacurate.

and remember after all of this- false negatives still happen...

let us know what happens

mushroom Proficient
mushroom
Posted

It sounds like you have psoriasis on your elbows. You should see a dermatologist - they have steroid creams to treat it with. Psoriasis is another auto-immune disease which often accompanies celiac disease :(

OHtummytroubles Rookie
OHtummytroubles
Posted
  • Author

Cass - I had the full Celiac panel at Cleveland Clinic a few weeks ago. Everything was negative except the ttg - iga which was at 16. That is still considered negative by CC standards. They require it to be over 20 to be a "weak positive". Different labs obviously have different levels. My total iga was over 300...so I am not IGA deficient. I was mainly wondering if one should actually do a gluten challenge eating large quantities of gluten just to get a positive result. If cross contamination or very small amounts of gluten can affect blood results of diagnosed Celiacs - why would anyone have to consume large quantities to get positive results when they are at the diagnosis state?

Mushroom - I googled psoriasis - and I definitely do not have those white patches or even raised red patches or any kind of a rash. It is just unusually dry or painful feeling. Maybe I am too sensitive? They really do not look bad....just feel a bit raw for some reason. Hmmm. I used some CeraVe cream on them today and it worked great!

SaraKat Contributor
SaraKat
Posted

What about the endoscopy? If you don't want that route then I would eat more gluten and have the blood test done again.

My first TTG IGA test was 38, 2 weeks later (right before my biopsy) it was way higher than that (like over 150) and I wasn't even eating any differently. I have no idea how that happened.

OHtummytroubles Rookie
OHtummytroubles
Posted
  • Author

What about the endoscopy? If you don't want that route then I would eat more gluten and have the blood test done again.

My first TTG IGA test was 38, 2 weeks later (right before my biopsy) it was way higher than that (like over 150) and I wasn't even eating any differently. I have no idea how that happened.

SaraKat,

I am assuming that the Dr. wouldn't schedule an endoscopy unless my bloodwork shows a high enough ttg-iga level - so maybe they will order one once I do the second test. I am all for it when she decides to schedule it. The last scope I had done was back in 2006 when all my tummy troubles started (after childbirth).I had went down to 92 lbs at that time, and hadn't really eaten anything but Ensure for 6-8 weeks before they decided to do a scope. Knowing what I do now - I bet they couldn't see any gluten/vili damage because I wasn't consuming anything but gluten free Ensure for weeks and weeks :)I occasionally ate some plain white rice or grilled chicken - but again no gluten. In 06' I didn't even know about Celiac to tell them I had not been eating gluten.

38 to over 150 in two weeks? That is a high jump! Wow! Maybe me upping my gluten to daily consumption really would make all of the difference in levels. I had done about 5 months gluten free, then went to eating gluten again back in July. I just do not eat it often or daily because I do have so many issues with my tummy/pain. I will suck it up and eat it regularly and retest at the clinic in a few weeks. Thanks for your response :)

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