Being Glutened By Supplements?

[Rhobhan]

I will try to be brief. I was diagnosed with celiac disease 7 years ago, and have followed a strict gluten-free diet since then, except when I was accidentally glutened—but that has happened less than five times.

Last spring I slowly started losing weight, and I am a lightweight guy, and I seemed to have upset stomach and bouts of diarrhea. I made an appointment with my gastroenterologist, and I have had a lower GI MRI, and an endoscopy, which did reveal that there was damage to my upper duodenum consistent with exposure to gluten. I was stunned!

My doctor says I must be getting low amounts of gluten somehow, but I am religious about what I eat. When I told him I had been taking fish oil supplements, a magnesium supplement, a B12 supplement, and a calcium supplement as well as generic Claritin, he lit up. He told me to stop taking all supplements, that many contain hidden amounts of gluten even though the bottle may list the supplement as gluten free.

He has ordered a "pill cam" procedure, where I swallow an electronic capsule that photographs my entire digestive tract from one end to another. He wants to rule out lymphomas that he says can be complications of celiac.

Now I am wondering what to do about the supplements I am no longer supposed to take! I am 65 and have borderline osteoporosis, thanks to the celiac no doubt.

Any thoughts are welcome.

[kareng]

I would be more worried about other things you are eating. Maybe re- check foods you thought were gluten-free and maybe were a few years ago - could have changed? Or the brand you buy isn't gluten-free but most are? Are you eating food prepared by others? Do you live with gluten eaters?

Were your blood tests negative?

Make sure the doc addresses these other reasons for damage especially if the blood tests are negative

Open Original Shared Link

[SMRI]

That is interesting.  I was having stomach issues a couple weeks ago and could not figure out why.  The only thing I could think of was my multivitamin.  I stopped taking that and my stomach issues went away.  I don't know that it was gluten but something was not agreeing with me.  The bottle says gluten free.

[dilettantesteph]

I think that the doctor assumed that it was the supplements because a study has come out recently about contamination of supplements: Open Original Shared Link

 

I don't know if that means that the most likely source in your diet would be the supplements.  It would a good idea to also look elsewhere as Kareng suggested.  Also try to look for a pattern with what you eat and when you get your symptoms.  A food/symptom journal can be helpful fo this.

 

I hope that you feel better soon.

[Finally-45]

I'm a witness that gluten in supplements still cause harm.  The sublingual vitamins often work out as grain free.

[Gemini]

I think that the doctor assumed that it was the supplements because a study has come out recently about contamination of supplements: Open Original Shared Link

 

I don't know if that means that the most likely source in your diet would be the supplements.  It would a good idea to also look elsewhere as Kareng suggested.  Also try to look for a pattern with what you eat and when you get your symptoms.  A food/symptom journal can be helpful fo this.

 

I hope that you feel better soon.

Unless I am mssing something here, your "study" is about herbal supplements, not vitamins.  Big difference.

 

To the OP......I think the statement your doc made about supplements being contaminated even if they are labeled gluten free is a bit of a stretch.  I take all of the supplements you listed and have never had a problem.  I would suggest making sure they are a good, trusted brand for Celiacs, which are marked gluten free.  I use supplements purchased through my docs office, from different reputable companies and in almost 10 years, the supplements never caused a problem.  My blood work is stellar and I am an ultra sensitive type too.  You need to be taking calcium because of your bones.  I am in the osteoporosis boat myself.

 

You don't necessarily have to buy through a doctor but I like the brands she uses and they are all clearly marked gluten free.  Re-check all your supplements or even post the brands here so we can help.  Then re-check your diet.  Do you eat dairy?  That will cause your symptoms AND lactose intolerance can flatten villi also, if that was the damage he was seeing.  It could be from other foods you are becoming intolerant to.  I didn't develop lactose intolerance until about 2 years into the diet.

 

Good luck with all your testing!  Hang in there, you will figure it out.

[dilettantesteph]

That comments makes it look like I need to make myself more clear.  I think that the doctor thought of supplements as the problem because of the study.  I don't think that is necessarily the actual problem.  I think that the advice that Kareng gave about looking for gluten elsewhere as well is a good idea.

[Gemini]

We don't know whether this doctor read any studies or not.  From the sound of what he said to the OP, it sounds like he is the same as many doctors out there who aren't Celiac.They really don't know what they are talking about.

 

I totally understand labeling laws and that meds and supplements do not have the same rules as food companies must abide by BUT..........this statement is ridiculous.  No company is going to go through the trouble of labeling their product as gluten free if they aren't reasonably sure their product is gluten free to begin with.  If you know how to read a label or question a company for real gluten-free status, you would know that the odds of there being "hidden" gluten in a vitamin that is marked gluten free on the bottle is next to nil. It is an unnecessary worry for Celiac's.  I have taken many different brands of vitamins over many years of being gluten-free and never got sick off of a vitamin.  Herbals I do not use so can't comment on those. But rest assured, there are many safe vitamins out there for us so if someone suspects they are ingesting gluten somewhere, they need to consider food, new intolerances developing or other medical issues before blaming a bottle of vitamins that are clearly marked gluten-free.  Use a good name brand vitamin or even ones specifically geared towards Celiac's, if there are any doubts. 

 

 

He told me to stop taking all supplements, that many contain hidden amounts of gluten even though the bottle may list the supplement as gluten free.

[IrishHeart]

I take a few G F supplements and my recent follow up biopsy showed no active celiac (just some scaring from years of going unDXed)

 

The blanket statement 'supplements can contain gluten"  may not apply, since the doctor has no knowledge of what you are taking--has he checked the brands, etc?

 

If you selected G F supps, there should be no problem. If you are worried about it, use certified G F ones, like Country Life.

 

Changes in the duodenum can occur for many reasons other than gluten exposure. Only a biopsy would tell the doc if the villi are damaged.

 

The pill cam is a good way to start looking at the entire tract, but if i were you, I would do as Karen suggests above. 

 

Good luck. Let us know how you make out!

[Rhobhan]

Thank you all for taking time to post your thoughtful comments.

I take Caltrate (company website and other literature says it is gluten free), fish oil and glucosamine sulfate made by Spring Valley (labelled gluten free), magnesium, Cholestoff, and a B12 complex by Nature Made, also labelled gluten free.

I am not experiencing any symptoms, but I sure did when I was glutened twice within a five week period, once by foolishly trying a bottle of beer labeled "gluten removed,"—but really just claimed to be less than 20 ppm, and once eating a seAfood salad that the waiter assured me was gluten free. He claimed he had checked with the chef, but that night I spent in the bathroom! Found out the salad contained artificial crab!

I have no symptoms after drinking milk, eating yogurt, or drinking kefir. I would think I would be experiencing diarrhea, cramps etc. if I were lactose intolerant.

I closely read labels, and rarely eat processed foods. My breakfast cereals are gluten free.

I am stumped.

[Rhobhan]

I think the biggest mine field is when we travel and have to eat in restaurants. Even though I rigorously question waitstaff, use gluten-free dining cards, and FindMe Gluten Free app on my phone, I think the danger is high of being glutened by ignorant chefs, waitstaff and cross-contamination in the kitchen.

My EGT last month was the first since my initial diagnosis 7 years ago.

I wonder if, like IrishHeart, I too have residual scarring from years of having celiac before diagnosis.

[dilettantesteph]

I should have put this in my first post, but my mind wasn't working very well then.  My experience with supplements was that my health improved significantly when I cut them all out.  I was taking quite a few and likely, in my opinion, something was gluten contaminated.  I am very sensitive so that my experience would not apply to the vast majority of celiacs.  Since you having ongoing problems, you may not be in the vast majority of celiacs as well.  I researched how to get nutrients from food.  There were a few things that I couldn't get from my food, so I added those things back in supplement form one at a time so that I'd be able to tell if anything bothered me.  Right now I'm taking iodine, a probiotic, and a digestive enzyme.  The later is from a gluten-free certified facility.

 

I still agree with Kareng that supplements are not necessarily the most likely issue and that you should look in other places too. 

 

I apologize for the bickering.  Also, sorry about some spelling errors earlier.  I don't seem to be able to edit anymore, or I'd fix them.