Need Some Advice

[alevoy18]

Hi everyone, thanks in advance.

To keep this short, I was diagnosed in 2009 with Celiac disease by positive anti-tTg IGA and positive biopsy. My tTg at the time was 28 (range 0 - 10) and my biospy put me at Marsh IIIb (moderate villus atrophy). My blood test at 1 year had my tTG up to 40 which was a disappointment, so I restricted my diet down to mainly whole foods. The only processed foods I eat are gluten free cereals from my health food store. My most recent test showed that my tTG was now 190!!!! How can this be in one years time??? I also have been dealing with on and off mild anemia. My reticulocyte count has also been low consistently, so I may be going for a bone marrow biopsy. In the end my question is how can the tTg go up almost 5 times the original value in one year when I've restricted my diet over that time. Even if I accidentally got CC'd here and there, I don't see how it could change so fast. I am just worried about having elevated levels as I want my risk for other health issues to go back to normal. Also I am confused as to why my stomach issues have improved. Since going gluten free I no longer have any bowel issues. My bowel movements are normal, my gas is gone and all seems fine. My only issue is 20 lbs weight loss in the last 6 months and fatigue, but no stomach problems. Anyways, any advice is appreciated!!!

Thanks everyone!!

[ravenwoodglass]

Do those gluten free cereals you are eating have oats? Some of us don't tolerate oats. Are you on any medication and if you are have you checked to make sure that the meds are gluten free with the maker? If you have a significant other who eats gluten are they taking care not to contaminate you by brushing teeth before kissing? Are you using any home remodeling or arts and crafts type stuff? Some things we need to take precautions with like drywall mud and wall paper paste for example.

It is good that your doctor has checked this. Have they considered doing a repeat endo to see if you have healed? That might be a good idea.

[alevoy18]

Do those gluten free cereals you are eating have oats? Some of us don't tolerate oats. Are you on any medication and if you are have you checked to make sure that the meds are gluten free with the maker? If you have a significant other who eats gluten are they taking care not to contaminate you by brushing teeth before kissing? Are you using any home remodeling or arts and crafts type stuff? Some things we need to take precautions with like drywall mud and wall paper paste for example.

It is good that your doctor has checked this. Have they considered doing a repeat endo to see if you have healed? That might be a good idea.

Thanks Ravenwoodglass, I appreciate the response. To answer your questions.

1. No, the only cereals I eat are Nature's Path gluten-free Mesa Sunrise, Nature's Path gluten-free corn flakes & Glutino Honey Nut O's. I avoid oats all together as I didn't want to risk it.

2. I am on a Cortisone for adrenal insufficiency and florinef/midodrine for low blood pressure. I checked with my pharmacist and they told me they contacted the manufacturer to make sure it was.

3. My fiance does eat gluten, but we have seperated the kitchen. I have my own everything and we are strict with it. I do admit that I will kiss her without her brushing her teeth, so I likely have some mistakes, but we try our best to keep it safe.

4. Well my GP called me to let me know that my reticulocyte count was low again and at the same time she noticed my blood work came back from my Gastro doctor. She left a message with him to call me next week about it. I will likely have an appointment in the 2-3 months and he will might suggest that. In Canada health care works at one speed, slow, so it might take awhile. I'm waiting to see a Hematologist about the retic count as well, so I hope to get some answers soon.

I know the only reason it would go up is for gluten sneaking in, so I am frustrated since I've worked so hard in the last 2 years. As you know, life is not always easy getting used to it and being strict with it. I never would of thought my TTG would go up since I eat fresh whole foods for every meal except breakfast where I like cereal. I am a boring guy, so sometimes I eat the same meals every day for weeks to make life easier and not risk any CC. I felt that I was doing great because I didn't have stomach problems anymore, so I was shocked and disappointment in myself. Is it normal for TTG to go up so much in a short time because I thought TTG was in line with intestinal damage and if mine was Marsh 3B at 26, 186 must be worse. Also how would my stomach issues go away and my TTG get higher? I know nobody can answer all my questions and hopefully my Gastro will give me some help soon. I just wanted to see if anyone else had this happen to them. Thanks a lot Raven, I appreciate it!

[T.H.]

I honestly don't know if this would apply, but I know that for many of us, we get more sensitive to gluten after we've been gluten free for a while. Perhaps that might account for the higher blood levels? Not sure, honestly.

Have they looked at anything else that might affect these blood levels?

Also...are you eating any beans, nuts, seeds, grains, or dried fruit? These can often be processed in facilities that process wheat, and they are not legally required to put that 'also processed in a facility that processes wheat' label on the package. Could be contaminated possibly?

There was that study last year, I think it was, that was finding gluten contamination of some gluten-free flours and whole grains, too, so it's definitely a possibility for the gluten-free grains. The flours they tested were grains and legumes, both.

Do you eat any ground meat? We've run into trouble with ground meat processed on grinders that also make wheat-containing sausages.

Oh, re: the oats? If you happened to have this, it seems to have the same issues as gluten with celiacs: cc can still get you pretty darn good. So just avoiding the oats may not be enough. There's a rice that is very gluten free, for example, but has a cover crop of oats. A number of oat sensitive celiacs I know get sick when they eat it, and it is assumed that the oat contamination is likely.

A number of companies that process gluten-free flours and grains may also process gluten-free oats in the same facility, like Bob's Red Mill. Anything that is CSA certified, though, has to take steps to prevent oat cross-contamination, so they are safer for that sort of thing.

Hmmmm, wracking brain for other weird gluten cc sources.... Use any cooking oil? Herbal tea? My oil was getting me because it was processed on a line that processed wheat germ oil. We had two teas zap my daughter; one had oat straw, and the other was processed with other teas that contained barley.

When you checked on your meds, was that recently? Maybe it's just my own impression, but it seems like with this recession, more of the companies are changing their ingredients more often. I'm assuming maybe to help keep costs low by finding cheaper ones? Just mentioned in case it might have changed since you last got meds.

[alevoy18]

Hi T.H., thanks for the response.

I too also pondered about whether or not being extra sensitive has anything to do with it, it is always a possibility, but going from the 20's to near 200 seems extreme. Who knows whats possible though.

I have not spoke to my gastro since my results came back, just my GP, so I will find out if they are going to test for anything else next week.

I eat nuts and dried fruit regularily as snacks. I thought this would be a safe way to snack on less processed foods, but I did not know about the lack of warning labels! Do you know if this applies to Canada to, as this is where I am from. Thanks for letting me know this.

Wow, CC on gluten-free flours, nothing seems 100% safe anymore.

I avoid ground meat as it worries me too much to risk it. I was planning on adding it in slowly if my tTG levels ever went down to normal, but at this point, I don't plan on eating it anytime soon.

The oats thing is a possibility too, so is this a risk with all rice or was it a specific brand that had issues? I am assuming any of them could have the risk, but how do we avoid it? I wish things could be clear and cut, but that is a pipe dream.

A number of companies that process gluten-free flours and grains may also process gluten-free oats in the same facility, like Bob's Red Mill. Anything that is CSA certified, though, has to take steps to prevent oat cross-contamination, so they are safer for that sort of thing.

I'll have to look into my oil, I thought it was safe, but I'm going to call the company to double check. THanks again.

I agree about the meds, it has been awhile since I looked them up and it could change at anytime with the way people want to save money now adays. I will look into it again.

Thanks for all your help!!!

[alevoy18]

I got a call today from my Gastro doctor. He said that he is scheduling me in for emergency Endoscopy this week as he has never seen a tTG jump this much or one that was 20 times the range before. Not encouraging to hear from your doctor but hopefully all will end up well, thanks for the help!