Gone Gluten Free But Have Questions

Rolodog3 · February 8, 2012

Hello, I've been following a gluten free diet since November of this year. I'm 52 and was diagnosed with Hashimoto's thyroiditis about 5 years ago. I've done a lot to improve the symptoms with the Hashimoto's, but found in my readings and through my nurse practitioner that there is a link between thyroid disorders and celiac disease. I found this interesting because I was tested in my 30s for celiac with negative results (blood test no biopsy). I was given an IBS diagnosis and that was it. I continued to have symptoms (alternating debilitating bouts of diarrhea/constipation, anxiety/depression, infertility, headaches, fatigue, nutritional deficiencies) until trying a gluten free diet last fall.

My experience going gluten free has been positive. I've lost about 2 inches of stomach bloat (not fat because I haven't lost weight), and my stomach problems (alternating diarrhea constipation) have resolved. I feel I've made the right decision but wish I had a diagnosis to support my "alternate lifestyle." I am however reluctant to go back on gluten for testing. I have found that if I accidently ingest gluten, that a migraine sets in within 30 minutes and I have immediate tongue tingling and mouth sensitivity. Stomach problems usually follow. When the symptoms set in, I review what I've eaten and find that there was hidden gluten in the meal.

My question is, do I need a diagnosis? And are my reactions to gluten common after having given it up, especially the tingling tongue??? It seems extreme to think that I could go from eating a gluten-full diet one month and two months later be so sensitive to a little gluten. Thanks in advance for your thoughts. I'm going to see a new gastro doc in the next couple of months for a colonoscopy (both my father and grandmother had colon cancer) and I want to be able to ask about the testing and know my options. Again thank you!

Skylark · February 8, 2012

Hi and welcome.

It sounds to me like you might have a wheat allergy. That tongue tingling and mouth thing sounds like it could be oral allergy syndrome. You can be tested for a wheat allergy without going back on gluten, though food allergy tests are notoriously unreliable.

As far as celiac (you can have both allergy and celiac) you and I are in the same boat. I can't tolerate wheat well enough to start eating it and be tested. I tested negative for celiac as a child but the tests weren't good then, and I wasn't eating much wheat because it made my stomach hurt even then. I was told I wasn't celiac and had to figure out the gluten intolerance on my own. I assume I'm celiac and stick to the diet strictly. It seems safer. I get sick when I eat gluten so it's not as if I am interested in eating the stuff.

Rolodog3 · February 8, 2012

Thanks Skylark. Don't know if I want to bother with an unreliable wheat allergy test. I just think it is odd after eating gluten for most of my life that I'd have this reaction after going off of it when I get some sneaky wheat from somewhere (once it was soy sauce, another time a friend made me a soup that she swore was gluten free but had some type of food starch in the ingredient list--learned this after the tongue started tingling and the migraine started.) Just interesting. I guess I'll discuss it with the new dr. and get his take on it. I don't mind self prescribing when it has obviously helped....

Skylark · February 8, 2012

You are not alone with the stronger reactions. A lot of us notice it, me included. I also react to less gluten than I did when I first went gluten-free. For me it's GI and I usually get a canker sore in my mouth. And maybe anxiety.

Rolodog3 · February 8, 2012

Thanks for your input. I think I would have been tested before going gluten free, knowing what I do now. I'm unwilling to try anything as the tongue tingling REALLY worries me. I don't have an epipen and I would prefer not to need one

Skylark · February 9, 2012

Sounds like a wise choice to me.

frieze · February 11, 2012

On 2/8/2012 at 11:22 PM, Rolodog3 said:

Thanks for your input. I think I would have been tested before going gluten free, knowing what I do now. I'm unwilling to try anything as the tongue tingling REALLY worries me. I don't have an epipen and I would prefer not to need one

as you have found out, you may be exposed and not know it. An epipen may not be a bad idea.

researchmomma · February 11, 2012

While the testing for wheat allergy can be unreliable, it certainly wouldn't hurt to get tested. You may want to talk to your doc about an epipen if you do have an allergy.

An allergy can be deadly and with every exposure your body increases its response to the allergen.

I think Skylark (pretty sure it was you) gave one of the best explanations about reactions our body makes when eating gluten full time, gluten-free and then re-exposure.

When you are on a full gluten diet and gluten intolerant, your body attacks what it can (what it has time for). So it will attack your mouth, your gut, or whatever. After your body has healed and the foreign body isn't present, it can gear up and attack the small little gluten you introduce with full force.

I think that is what you said Skylark. If I am wrong, give me a verbal spanking. I can take it!

Rolodog3 · February 12, 2012

Okay, now I'm thoroughly freaked out. Yikes.

I have an appt with the dr. a week from Monday. I'll talk to her about the mouth tingling, testing for wheat allergy and share your comments re: the epipen. I'm currently trying to clean out the kitchen and get all wheat containing products out or in a separate location (for my son's use).

BTW, did anyone hear Dr. Nancy Snyderman on the Today Show today tell someone to go on a gluten free diet before testing for celiac disease? She said it couldn't do any harm. right....

researchmomma · February 12, 2012

On 2/12/2012 at 5:29 AM, Rolodog3 said:
Okay, now I'm thoroughly freaked out. Yikes.

I have an appt with the dr. a week from Monday. I'll talk to her about the mouth tingling, testing for wheat allergy and share your comments re: the epipen. I'm currently trying to clean out the kitchen and get all wheat containing products out or in a separate location (for my son's use).

BTW, did anyone hear Dr. Nancy Snyderman on the Today Show today tell someone to go on a gluten free diet before testing for celiac disease? She said it couldn't do any harm. right....

They should take her MD away! I wish someone would tell the Today Show she gave out the wrong information. Argh.

Don't be freaked out, that is not what I intended. Just rule it out.

Skylark · February 12, 2012

On 2/11/2012 at 11:12 PM, researchmomma said:

While the testing for wheat allergy can be unreliable, it certainly wouldn't hurt to get tested. You may want to talk to your doc about an epipen if you do have an allergy.

An allergy can be deadly and with every exposure your body increases its response to the allergen.

I think Skylark (pretty sure it was you) gave one of the best explanations about reactions our body makes when eating gluten full time, gluten-free and then re-exposure.

When you are on a full gluten diet and gluten intolerant, your body attacks what it can (what it has time for). So it will attack your mouth, your gut, or whatever. After your body has healed and the foreign body isn't present, it can gear up and attack the small little gluten you introduce with full force.

I think that is what you said Skylark. If I am wrong, give me a verbal spanking. I can take it!

This is a great point, that it couldn't hurt to get tested for wheat allergy. If you get a strong reaction you know that it's dangerous.

And yes, you got the idea, thought I have a slightly different understanding of it. Your immune system works differently when there is a constant stimulus. Take away the constant gluten exposure and when you eat it, there are freshly activated T-cells. My understanding from Nora is that these freshly activated T cells can make us sicker than than the chronic immune response we were dealing with before.

researchmomma · February 13, 2012

On 2/12/2012 at 10:48 PM, Skylark said:
This is a great point, that it couldn't hurt to get tested for wheat allergy. If you get a strong reaction you know that it's dangerous.

And yes, you got the idea, thought I have a slightly different understanding of it. Your immune system works differently when there is a constant stimulus. Take away the constant gluten exposure and when you eat it, there are freshly activated T-cells. My understanding from Nora is that these freshly activated T cells can make us sicker than than the chronic immune response we were dealing with before.

Aha! That was it. Thank you for clarifying!