6 Months gluten-free Still Have Antibodies

[diane h]

A little background:

I was diagnosed with celiac 6 months ago from a small bowel biopsy. I had been referred to a gastro specialist because of elevated liver enzymes and anemia that was not responding to iron suppliments.

They did an endoscopy & colonoscopy looking for a reason for the anemia.

No bleeding- but a biopsy revealed celiac.

So 6 months later, I've been gluten free since Aug. I have had two blood tests that show I still have antibodies for gluten.

My Dr wants to do another endoscopy. What would this do since I am already diagnosed with celiac?

I am very discouraged. I can't imagine where I am picking up this mystery gluten, or what is going on.

Does anyone one have any ideas & what questions should I be asking my Dr.?

Is this what refractory sprue is?

[nw0528]

I believe repeating the biopsies would let them see how much improvement there has been since your previous biopsies and being gluten free for six months, especially since your bloodwork is still showing antibodies.

Nicole

A little background:

I was diagnosed with celiac 6 months ago from a small bowel biopsy. I had been referred to a gastro specialist because of elevated liver enzymes and anemia that was not responding to iron suppliments.

They did an endoscopy & colonoscopy looking for a reason for the anemia.

No bleeding- but a biopsy revealed celiac.

So 6 months later, I've been gluten free since Aug. I have had two blood tests that show I still have antibodies for gluten.

My Dr wants to do another endoscopy. What would this do since I am already diagnosed with celiac?

I am very discouraged. I can't imagine where I am picking up this mystery gluten, or what is going on.

Does anyone one have any ideas & what questions should I be asking my Dr.?

Is this what refractory sprue is?

[Gfresh404]

I would double check all of your foods. I thought I was gluten-free but noticed some days I felt like crap even though I would be eating almost the exact same thing everyday. It turned out to be a cross contamination issue with Lay's potato chips. So double check your foods and make sure they are not made on the same lines as other wheat/gluten containing products. Good luck

A little background:

I was diagnosed with celiac 6 months ago from a small bowel biopsy. I had been referred to a gastro specialist because of elevated liver enzymes and anemia that was not responding to iron suppliments.

They did an endoscopy & colonoscopy looking for a reason for the anemia.

No bleeding- but a biopsy revealed celiac.

So 6 months later, I've been gluten free since Aug. I have had two blood tests that show I still have antibodies for gluten.

My Dr wants to do another endoscopy. What would this do since I am already diagnosed with celiac?

I am very discouraged. I can't imagine where I am picking up this mystery gluten, or what is going on.

Does anyone one have any ideas & what questions should I be asking my Dr.?

Is this what refractory sprue is?

[Light]

I would double check all of your foods. I thought I was gluten-free but noticed some days I felt like crap even though I would be eating almost the exact same thing everyday. It turned out to be a cross contamination issue with Lay's potato chips. So double check your foods and make sure they are not made on the same lines as other wheat/gluten containing products. Good luck

Gfresh--

Can you tell me about the cross contamination issue? I've had a terrible setback for several weeks and have been eating a lot of lays low salt chips.

Thanks,

Mike

[Jenny (AZ via TX)]

Lays chips, other than the STAX line, are not made on dedicated lines. The STAX chips are. If you go to the Lays website it lists their chips with this disclaimer.

Many people eat the Mission Corn Tortilla chips without any problems. I eat them as well.

[diane h]

Lays chips, other than the STAX line, are not made on dedicated lines. The STAX chips are. If you go to the Lays website it lists their chips with this disclaimer.

Many people eat the Mission Corn Tortilla chips without any problems. I eat them as well.

So is it possible that for the last 6 months I have had enough cross contamination to make me positive for antibodies?

I have had lays chips a few times, but I generally eat healthy foods.

So should I only be eating things that say gluten free on them?

I have been so careful reading every label for gluten ingredients, only eaten out maybe once a month at the most & then i get burgers without buns, no fries just meat & lettuce and tomato.

Are there other ingredients that can cause a positive antibody test?

I am discouraged and confused. I thought I was doing so good on this diet. Yikes.

[Gemini]

So is it possible that for the last 6 months I have had enough cross contamination to make me positive for antibodies?

I have had lays chips a few times, but I generally eat healthy foods.

So should I only be eating things that say gluten free on them?

I have been so careful reading every label for gluten ingredients, only eaten out maybe once a month at the most & then i get burgers without buns, no fries just meat & lettuce and tomato.

Are there other ingredients that can cause a positive antibody test?

I am discouraged and confused. I thought I was doing so good on this diet. Yikes.

Diane....I wouldn't be too worried just yet. It took me a full year to being my antibodies down and that is extremely common. Too many Celiacs automatically think they are ingesting gluten when they may not be and that would be a mistake that will set you back big time. Are your antibodies down at all or are they still as high as they were when you were diagnosed? How are you feeling overall? One good indicator of gluten consumption would be that you would also feel sick much of the time, unless you are one without symptoms. Are you still anemic? I am not sure I would agree to a second endo unless a full year had passed and your antibodies are still high. The doctor isn't giving you enough time for recovery.

[leadmeastray88]

So is it possible that for the last 6 months I have had enough cross contamination to make me positive for antibodies?

I have had lays chips a few times, but I generally eat healthy foods.

So should I only be eating things that say gluten free on them?

I have been so careful reading every label for gluten ingredients, only eaten out maybe once a month at the most & then i get burgers without buns, no fries just meat & lettuce and tomato.

Are there other ingredients that can cause a positive antibody test?

I am discouraged and confused. I thought I was doing so good on this diet. Yikes.

Hi Diane!

I'm so sorry to hear that you're still having trouble.

The first thing that set alarm bells off with me in your post was the burger issue - have you made sure they don't put bread crumbs in them as filler? Learned that the hard way at a restaurant.

There's a link on this site that lists all of the ingredients you should watch out for -

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Other than that, do you take vitamins/supplements? Have you checked them for gluten?

Some people are so sensitive, they can't use shampoo, soap, creams or makeup containing gluten. You may be one of them.

Have you replaced things in your kitchen that gluten clings to? Wooden spoons? Toaster? Colander? Old scratched Teflon pans? etc.etc..

Then again, you could just still be healing. Like Gemini said, sometimes it takes some people longer than others.

Good luck

[diane h]

Thanks for all the info.

I am feeling better, and i am no longer anemic so i know that my gut is better then it was before.

I have doubled checked all the pills and vitamins I take, calling about each lot number, to make sure they are gluten free.

I have gotten rid of old wood kitchen spoons and other things that gluten could be hanging out at.

My husband and daughter still eat gluten foods, i am wondering if they are somehow cross contaminating me.

I see my Dr in April and until then I guess I will be living a non processed food life trying to eliminate any possibility of cross contamination and see where that leads me on the blood work.

This is has been such a roller coaster ride for me. Felling like crap for so long without a correct diagnosis, & then finding out that it was celiac, then freaking out that it was celiac, then accepting it and being happy about being able to control my health, then finding out I'm still positive for antibodies despite all the changes.

[dilettantesteph]

My son and I both have celiac and we are both very symptomatic so it is easy to tell when we get contaminated. We tried for almost a year having a mixed household with my husband and daughter eating gluten and my son and I not. We even ate at separate tables in different rooms and still my son and I kept getting contaminated. We finally went to a gluten free household and my son and I are all better. It is also nice to eat the same food at the same table again. We are both very sensitive to small amounts so that is part of it. Some people so manage, but if you are sensitive, you probably won't be able to. It is really nice not having gluten reactions any more.

[Darn210]

Diane....I wouldn't be too worried just yet. It took me a full year to being my antibodies down and that is extremely common. Too many Celiacs automatically think they are ingesting gluten when they may not be and that would be a mistake that will set you back big time. Are your antibodies down at all or are they still as high as they were when you were diagnosed? How are you feeling overall? One good indicator of gluten consumption would be that you would also feel sick much of the time, unless you are one without symptoms. Are you still anemic? I am not sure I would agree to a second endo unless a full year had passed and your antibodies are still high. The doctor isn't giving you enough time for recovery.

I agree with this post . . . especially if you had symptoms before and don't now. I would call and get your lab test results for your initial test and your six month follow-up and compare those two numbers. I would expect some good progress but not necessarily negative . . .

Here is an article on refractory sprue:

https://www.celiac.com/articles/710/1/Refra...gram/Page1.html

In refractroy sprue, the gut doesn't heal (patient still has symptoms such as malabsorption, weight loss, etc) even though the patient is strict with their diet (ie, the antibody test is negative). You said your anemia is better so you know your gut is healing

Personally, I would double check your food/toiletries/kitchen equipment (which it sounds like you've done) and eliminate anything that you have any doubts about. If you made good progress on reducing your antibodies, and your symptoms are getting better, I might just ask for another blood test in 6 months and reevaluate then.

[Tallforagirl]

If you made good progress on reducing your antibodies, and your symptoms are getting better, I might just ask for another blood test in 6 months and reevaluate then.

I'm with Darn210 and Gemini on this one. It can easily take more than six months for antibodies to get back to normal levels, especially if very high to start with (which is why it's worth checking what your levels were when first tested).

My tTG was >200 when first tested, then four months later it had come down, but only to 132, which is still a very high positive, but an improvement, so I know I'm on the right track.

It is definitely too early to assume you have refractory sprue, and I wouldn't assume you're accidentally getting glutened, unless you feel unwell, or your antibody levels have gone up.

[tmb]

Diane, I would say that eating burger meat, unless specifically prepared gluten-free is a good place to start. If you eat burger meat, are you also eating sausages etc. Any mixed or processed food is somewhere gluten is often found, even before you look into things like toothpaste, cosmetics etc. The rigour required to get and stay gluten free is major. I would say that you need to track your clinical symptoms closely or perhaps other tests like anemia etc and not just be guided by the antibody test. 6 months is not that long given others experiences in healing. I have been gluten free (aside from with some accidents) for 8 months, my antibody tests are negative, and I have not had scopes done because I went gluten-free and am not prepared to do the challenge tests. My measure of success is my health with indicators like stools, skin, weight loss, immune system. The diet change has improved mine immeasurably. I also find a danger point after a few months in beoming more adventurous with foods. Finding foods that are supposedly gluten free and not keeping my diet and symptom diary as strict means that I might miss other related issues (I also react to certain nuts, lactose, yeast etc) and although these might dissappear once gluten issues get fixed, there is a certain amount of risk involved when experimenting with new foods or reintroducing.

I share your frustration with the challenge of what you are doing and the period of illness leaing up, yet look at the positives. You have a culprit, gluten, and the means to avoid it. Allergies to pollens and dust etc are far harder to avoid. If you succesfully avoid gluten for the next few years recovery can be complete. The downside of slipping back into a gluten lifestyle do not bear thinking of, so embrace the positives of where you are. Things generally get beter from the initial diagnosis.

[oceangirl]

It took 2 YEARS for my numbers to get within normal range- and I made ALL my food from scratch and never ate out. I did suffer from random glutenings during that time. My partner, Michael, is also gluten-free now as we discovered that if he eats gluten and we kiss, it's curtains for me! It can take awhile. We have a gluten-free house, including older kids and pets and finally I feel good MOST of the time.

Good luck/Good health,

lisa

[RebeccaMSL]

I see an endo at Joslin in Boston and a gastroenterologist at Beth Israel in Boston, and both of these docs are supposed experts in the field, (I have both type 1 diabetes and celiac -fully diagnosed with biopsy of sm intestine) and neither one wants to re-check my antibodies. They say there is no point, that MANY times they will stay elevated, and MANY times they are not that elevated but still someone can be positive for celiac with an endoscopic biopsy. Neither one are even concerned, and say that if I feel better then I am better. I had consistent diarrhea every day until I was diagnosed with celiac and went gluten-free.

I guess that's good? B/c I do feel quite a bit better than previously, and I was underweight and anemic with low bone density when diagnosed, and now my anemia is almost gone, and I am no longer symptomatic unless I ingest gluten accidentally (and then in that case am extremely and violently ill, with extreme nausea and diarrhea and vomiting and sweating and loss of blood pressure. Needless to say I KNOW when I have been glutened.) There does not seem to be agreement in the medical community about whether there is any point in keeping track of antibodies. Personally, I am not sure what to believe. However, I would never undergo a repeat endoscopy, as I had a horrible time, and was held down while they shoved the tube down my esophagus. NO THANKS. Way too intrusive. If I were you I would keep looking at less invasive indicators of health (ie your gi symptoms, your anemia, a bone density scan, hair and skin, energy level etc).

Good luck! Feel better!

Thanks for all the info.

I am feeling better, and i am no longer anemic so i know that my gut is better then it was before.

I have doubled checked all the pills and vitamins I take, calling about each lot number, to make sure they are gluten free.

I have gotten rid of old wood kitchen spoons and other things that gluten could be hanging out at.

My husband and daughter still eat gluten foods, i am wondering if they are somehow cross contaminating me.

I see my Dr in April and until then I guess I will be living a non processed food life trying to eliminate any possibility of cross contamination and see where that leads me on the blood work.

This is has been such a roller coaster ride for me. Felling like crap for so long without a correct diagnosis, & then finding out that it was celiac, then freaking out that it was celiac, then accepting it and being happy about being able to control my health, then finding out I'm still positive for antibodies despite all the changes.