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Blood Test Still Positive

abaker521

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abaker521 Rookie
abaker521
Posted

Hi Everyone -

I've been feeling crummy all week so it was no surprise that after my bloodwork was done on on Tuesday the nurse told me I still had elevated celiac antibody levels. All she said was back in September before I was gluten-free, I was at 80 and now (5 months gluten-free) I'm at 61. I have been soo strict.. not only with food, but with CC and also beauty products. Does anyone know if antibody levels can spike from foods other than wheat, barley and rye? Can corn or oats cause this? I recently cut out dairy and coffee too, just in case. I'm going to find a specialized, even if I have to go out of state. I never had a biopsy done because my doctor didn't think I needed it. Also, they only tested 2 out of the 6 things on the celiac panel. Not sure why. Lately, I'm just been super bummed. I'm trying so hard but getting nowhere. ..blah <_<

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Takala Enthusiast
Takala
Posted

The only way corn or oats could cause "this" is if they were already cross contaminated with gluten. Otherwise they are safe, because they are a different grain than the wheat triticum family, unless you have an additional food type allergy or intolerance to them. That will still not be a celiac reaction that causes auto immunity. However, it is recommended that at first that the clean certified gluten free oats be avoided during the healing phase, then re introduced slowly.

A certain percentage of celiacs are permanently oat-sensistive, even if they are certified gluten free oats. (one theory is that this is due to the type of cultivar, or brand of oats being grown.) But this will not, in theory, make you have antibodies to the wheat family.

Gemini Experienced
Gemini
Posted

Hi Everyone -

I've been feeling crummy all week so it was no surprise that after my bloodwork was done on on Tuesday the nurse told me I still had elevated celiac antibody levels. All she said was back in September before I was gluten-free, I was at 80 and now (5 months gluten-free) I'm at 61. I have been soo strict.. not only with food, but with CC and also beauty products. Does anyone know if antibody levels can spike from foods other than wheat, barley and rye? Can corn or oats cause this? I recently cut out dairy and coffee too, just in case. I'm going to find a specialized, even if I have to go out of state. I never had a biopsy done because my doctor didn't think I needed it. Also, they only tested 2 out of the 6 things on the celiac panel. Not sure why. Lately, I'm just been super bummed. I'm trying so hard but getting nowhere. ..blah <_<

Could you get copies of your testing and post which tests were run and the numbers? It's hard to give advice when I don't know which tests were run because that does make a difference. All I can generally say is that 5 months is not a very long time to be gluten-free and expect your numbers to be stellar.

I never re-tested for 1 year and then my numbers were good. Feeling crummy doesn't necessarily mean it's from gluten either.....I have a virus this week that's been going around and I feel like crap, including my tummy, which never bothers me anymore. I have been gluten-free for 7 years this April. I have a virus and it has nothing to do with gluten. Your numbers have come down a little bit and that's good but please post actual testing and results and we'll be able to help you more.

abaker521 Rookie
abaker521
Posted
  • Author

Thanks for the replies :) ..yes I have requested to have my tests sent to me then I'll definitely post them. I felt great last week but over the weekend at the health food store, I had a sample of a new 'gluten/dairy free' protein bar only to find out it had wheatgrass in it. That was Saturday then my test was on Tuesday.. so perhaps that's it? I still feel like the gluten is making it's way out of my system. I've had sharp lower abdominal pains, distended belly, brain fog, and those oh-so-lovely mood swings. :blink: ..I'm feeling slightly better today, but this was really took a toll on me. Had my first 'celiac breakdown' yesterday LOL. Thank goodness I have a patient husband!

I'll be back with the test results shortly. Thanks again!!

WinterSong Community Regular
WinterSong
Posted

I got my blood tests redone at three months gluten free, and my doctor warned me that some people don't see any difference at all until they reach six months, so at least you're seeing progress.

I know it's frustrating. My doctor was shocked when my levels (which were quite high at 300+) dropped to 53.1. Then after another three months I was disappointed to see that it only went down to 30.9. I was hoping to be back in the normal range by then. But my doctor did also say that sometimes as you get closer to normal numbers, it can take longer for them to drop. So I'm still working on getting back to normal myself, and I've been on the diet very strictly for nine months.

Just keep being diligent, and I'm sure your levels will go down. :)

abaker521 Rookie
abaker521
Posted
  • Author

I appreciate the encouragement. I just got a call from the nurse this morning and she said I'm low on vitamin D so she suggested I get vitamin D3 (400IU) supplements. This was funny to me considering I live in Florida and I was just laying out in the sun last weekend! They also referred me to a dietitian. I swear, if they just tell me to "stay away from gluten and eat produce" I'm going to lose it. That's exactly what I've been doing.. and then some! lol ...I have developed a love affair with gluten-free Rice Chex so maybe I need to avoid that too. I think the worst part is the guessing game and the constant fear of "is this going to make me sicker." I know I'll get there.. it just takes time I guess. :unsure:

flowerchild04462 Newbie
flowerchild04462
Posted

My 13 year old daughter's first blood tests were 300+ and after 6 months on a strict gluten-free diet, still 300+... I feel your pain and frustration. I just cannot imagine it :( I hope you feel better soon. Now we are going to follow through with an endoscopy and I'm going to request a full celiac panel done and ask for testing for other possibly auto immune diseases, just to rule anything out. It's so frustrating to work so hard to keep her gluten-free to find out that we got no-where. Hope you have better results on your next test.

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dilettantesteph Collaborator
dilettantesteph
Posted

It is possible that you need more time.

It is also possible that there are still things in your diet/environment which are bothering you. In the Fasano study which determined that 20 ppm levels are safe, Open Original Shared Link one of the participants had to leave the study due to a complete relapse.

In other words, those levels aren't safe for some of us. It is hard to know who. Some need a whole foods diet.

abaker521 Rookie
abaker521
Posted
  • Author

OK! I finally got my test results sent to me and I'm utterly confused (such a newbie, sorry!)..

When I was first diagnosed back in September these were my results:

Gliadin AB (IGA) 51.0 Unit/mL (high)

Transglut IGG 3.4 unit/mL (normal)

Transglut IGA >80 unit/mL (high)

Gliadin IGG 10.5 unit/mL (high)

These were my results from a week ago (he only tested the following two):

Gliadin AB (IGA) 5.3 Unit/mL (normal)

Tranglut IGA 61.6 (high)

..can anyone help me interpret these results? It looks like my Gliadin IGA went down to normal range but my Transglut IGA is being stubborn.

I'm determined to conquer this! :angry: ..thanks in advance for your help!

Linus Newbie
Linus
Posted

The half life of the antibodies (iga ttg) is 4 to 5 months. As long as gluten is not present, the antibodies are harmlessly floating around. Don't expect dramtic chanes in 5 months.

dilettantesteph Collaborator
dilettantesteph
Posted

Are you still having symptoms?

Gemini Experienced
Gemini
Posted

OK! I finally got my test results sent to me and I'm utterly confused (such a newbie, sorry!)..

When I was first diagnosed back in September these were my results:

Gliadin AB (IGA) 51.0 Unit/mL (high)

Transglut IGG 3.4 unit/mL (normal)

Transglut IGA >80 unit/mL (high)

Gliadin IGG 10.5 unit/mL (high)

These were my results from a week ago (he only tested the following two):

Gliadin AB (IGA) 5.3 Unit/mL (normal)

Tranglut IGA 61.6 (high)

..can anyone help me interpret these results? It looks like my Gliadin IGA went down to normal range but my Transglut IGA is being stubborn.

I'm determined to conquer this! :angry: ..thanks in advance for your help!

I replied to you in a PM but will add that from your blood work, it doesn't look like gluten is the culprit. Your gliadin IgA has come down very nicely and that's the test for compliance. Feeling crummy can come out of nowhere for anyone and eliminating dairy for now is probably a good idea.

I developed a problem with dairy 2 years into the diet. I can eat very dairy lite now but will never be able to eat a bowl of ice cream or pudding again.

A spoonful is OK but a bowlful will have me spending the day near a bathroom. It is not unusual for people to develop a problem with dairy after months on the diet. You may not have noticed it before because the gluten reaction was worse and masked the dairy reaction. A dairy reaction can mimic a gluten reaction 100%...it did for me.

You may not have to avoid the rice chex completely but don't overdo any one particular food or you'll overload the system. You are doing well so keep it up and expect to have to some off days. We all do!

abaker521 Rookie
abaker521
Posted
  • Author

Are you still having symptoms?

Yes I'm still having some symptoms unfortunately.. bloating..brain fog..mood issues.. but they certainly aren't as severe. My BM's are a bit better I suppose? :rolleyes: ...perhaps it's just all hormones too. I went out birth control a few months back and I know my body is still recovering from that too. I went off dairy so hopefully that will help!

abaker521 Rookie
abaker521
Posted
  • Author

I replied to you in a PM but will add that from your blood work, it doesn't look like gluten is the culprit. Your gliadin IgA has come down very nicely and that's the test for compliance. Feeling crummy can come out of nowhere for anyone and eliminating dairy for now is probably a good idea.

I developed a problem with dairy 2 years into the diet. I can eat very dairy lite now but will never be able to eat a bowl of ice cream or pudding again.

A spoonful is OK but a bowlful will have me spending the day near a bathroom. It is not unusual for people to develop a problem with dairy after months on the diet. You may not have noticed it before because the gluten reaction was worse and masked the dairy reaction. A dairy reaction can mimic a gluten reaction 100%...it did for me.

You may not have to avoid the rice chex completely but don't overdo any one particular food or you'll overload the system. You are doing well so keep it up and expect to have to some off days. We all do!

Thanks so much for all your VERY helpful information!! You told me 100% more than my own doctor.. who immediately scheduled me with a dietitian because he said I "wasn't following the diet." UGH! I have definitely cut out dairy and probably need to lay off all the fruits and veggies.. most likely over-doing the fiber lol. I feel best in the morning then it gets worse during the day (severe bloating, fatigue, feeling spacey). Can other autoimmune disorders cause an elevated Transglut IgA/tTg? Thanks again for your help!

Debbypete Newbie
Debbypete
Posted

There are other thoughts in the medical world about different kinds of "gluten". Here is a link to one of those ideas

Open Original Shared Link

Dr Osbourne says many other grains can act as gluten does in our bodies. I, for example get DH from corn/maize products. It is very difficult to eat anything. B)

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