Diagnosed As Gluten Intolerant, Is There A Correlation With Mast Cell Disorders?

[miss.west]

Hi all,

I was diagnosed with a gluten intolerance this past fall (positive serology, but inconclusive biopsy), and I have been on a gluten free diet ever since. All was fine until I recently began to react a lot more severely when exposed to gluten, I went from have the "regular stomach issues" to having such extreme stomach pains/cramps that I nearly called for an ambulance. In addition I will have something that looks like acne all over my face for the following 7-10 days. I will also get extremely fatigued for several days following, as well as lightheaded. I also appear to react to much smaller quantities of gluten, initially I would be fine eating something that was prepared on the same surface as something that contained gluten, but now cross-contamination is a big problem. More recently I have also begun to suffer from itchy skin and throat, which is why I was referred to see an allergy specialist, where it was determined that I do not have any food allergies. Now it appears that I might have some issue with my mast cells, I found out today that I have Dermatographic urticaria, and I am being tested now to see if this somehow correlates to my increased stomach pains.

Has anyone had a similar experience? Is there a correlation between gluten sensitivity and a possible mast cell disorder? Is it possible that I my gluten intolerance has been just "hiding" a mast cell issue? I obviously don't expect anyone to have any concrete answers on the issue, but from what I can make of it, there does not appear to be a whole lot of information about this out there... which is why any personal experience on the issue would be appreciated

Thanks!

[pricklypear1971]

Many celiacs or those with gluten sensitivity have various skin conditions. Autoimmune diseases are associated with, and are sometimes skin diseases. That said, I don't think demographic urticaria is considered an autoimmune disease. There is a celiac rash called dermatitis herpetiformis, characterized by a fluid-filled itchy lesion and rash. It looks different person to person.

If it is dermagraphia it may respond to homemade cromolyn cream: Open Original Shared Link

Many people find that after removing gluten, "things happen". I don't think a good reason has been found, other than its part of a healing process, and perhaps once gluten (the antagonist) is removed your body has resources to do other things...like break out in a rash.

The increased sensitivity to gluten cc is normal, unfortunately. So is discovering you have a leaky gut (and other temporary or permanent food intolerances). Gluten issues/autoimmune diseases, unfortunately, seem not to travel alone very often.

[Lisa]

Hi all,

I was diagnosed with a gluten intolerance this past fall (positive serology, but inconclusive biopsy),

Thanks!

Hey! Welcome to the Club! With a positive serologic test....consider yourself diagnosed with Celiac Disease. Biopsies can be very inclusive for sure. And with a positive dietary response in support. Again, welcome!

[miss.west]

Hey! Welcome to the Club! With a positive serologic test....consider yourself diagnosed with Celiac Disease. Biopsies can be very inclusive for sure. And with a positive dietary response in support. Again, welcome!

Thanks! Yes, so I have been told, it's a bit confusing to know under which classification one falls...

Many celiacs or those with gluten sensitivity have various skin conditions. Autoimmune diseases are associated with, and are sometimes skin diseases. That said, I don't think demographic urticaria is considered an autoimmune disease. There is a celiac rash called dermatitis herpetiformis, characterized by a fluid-filled itchy lesion and rash. It looks different person to person.

If it is dermagraphia it may respond to homemade cromolyn cream: Open Original Shared Link

Many people find that after removing gluten, "things happen". I don't think a good reason has been found, other than its part of a healing process, and perhaps once gluten (the antagonist) is removed your body has resources to do other things...like break out in a rash.

The increased sensitivity to gluten cc is normal, unfortunately. So is discovering you have a leaky gut (and other temporary or permanent food intolerances). Gluten issues/autoimmune diseases, unfortunately, seem not to travel alone very often.

The dermagraphia for me is not really an issue in itself, as I didnt even notice it until it was pointed out to me (probably because it is so recent). I suspect what I might be suffering of is systemic mastocytosis.. or something of that nature. Since I have had a combination of symptoms that cannot be solely attributed to gluten intolerance/celiac disease.

I am certainly relieved to know that Im not an odd case for having strange things "happen" to me after addressing my gluten sensitivity, after going undiagnosed for so long and having my doctor tell me its "all in my head", it really is a relief to know that I am not the only one without clear answers to everything

[pricklypear1971]

If the mastocytosis you're referring to is the rash that pops up after gluten exposure I would first consider gluten induced dermatitis, eczema, psoriasis or unfortunately dermatitis herpetiformis. I personally seem to have dh and dyshidrotic eczema. Thrilling.

For examples of how weirdly this stuff works.... My eczema doesn't seem to be triggered by gluten, but by AI episodes and washing dishes, using chemicals, and acids (citrus juice) - so I wear a glove on my right hand quite a bit. How do I roll my eyes on here???? My dh is triggered by immune issues like a virus...and goes nuts with iodine once provoked. I'm an odd one that gluten doesn't seem to provoke my dh easily (so far, knock on wood). But, and this hasn't happened in a year, if I get multiple low-level gluten exposures I go into an AI tailspin: tired, brain fog, grumpy, itchy....all bets are off. I could grow a second head and not be shocked.

If they (a dermatologist) is going to biopsy the rash for mastocytosis you need to request a separate biopsy to determine dh. They can't use the same sample used for other tests like mastocytosis. Read this: Open Original Shared Link

The good news about the rash may be, if biopsied correctly and it is dh, you will finally put the question of celiac v. ncgs to rest....since dh is celiac disease.

[miss.west]

If the mastocytosis you're referring to is the rash that pops up after gluten exposure I would first consider dermatitis, eczema, psoriasis or unfortunately dermatitis herpetiformis. I personally seem to have dh and dyshidrotic eczema. Thrilling.

If they (a dermatologist) is going to biopsy the rash for mastocytosis you need to request a separate biopsy to determine dh. They can't use the same sample used for other tests like mastocytosis. Read this: Open Original Shared Link

The good news about the rash may be, if biopsied correctly and it is dh, you will finally put the question of celiac v. ncgs to rest....since dh is celiac disease.

Hmm... That is certainly something I need to look further at.

The reason mastocytosis is on the table is not due to the acne-like rash, but the fact that my most recent stomach cramps/pains have been disproportional in severeity (I will nearly loose consciousness from the pain) to the possible gluten I might have been exposed to (I am very vigilant regarding my diet), while at the same experiencing throat itching, hives and lightheadedness/dizziness.

[pricklypear1971]

Hmm... That is certainly something I need to look further at.

The reason mastocytosis is on the table is not due to the acne-like rash, but the fact that my most recent stomach cramps/pains have been disproportional in severeity (I will nearly loose consciousness from the pain) to the possible gluten I might have been exposed to (I am very vigilant regarding my diet), while at the same experiencing throat itching, hives and lightheadedness/dizziness.

I think I saw something about dermagraphia and throat swelling/itching??? I was googling....

And as far as the gluten reaction....oh no, that most definitely can be gluten. It has hit me like a punch in the stomach, and I have had it so bad I wanted to pass out (and thought I would). And I'm not the only one. In the first 6-18 months your body will go through 100 changes. Your reactions will change. You'll think it's predictable then it's gone. Annoying.

And I'll add I have never knowingly eaten gluten since going gluten-free....the only time I had that kind of pain (followed by two weeks of acidic stomach/reflux/belly bloat) was after eating out at two restaurants that I had previously eaten safely at. I didn't see gluten -and didn't eat anything bready/noodley for it to hide in, so, the amount of gluten was probably miniscule.

[jebby]

I am looking into this (a link between Celiac Disease and mast cell disorders) right now. I have both Celiac Disease and a pretty severe sulfite allergy/intolerance which gets worse when I am exposed to gluten. There are a bunch of us on a sulfite intolerance forum who also have issues with gluten (some with Celiac Disease, some with non celiac gluten sensitivity, and some with IBS which is exacerbated by gluten). It seems like the link between the 2 may be the innate immune system being activated by gluten which causes more severe and quick "glutenening" symptoms than a normal autoimmune reaction should, and then typical "allergic" symptoms like hives, runny nose, itching, etc. when exposed to gluten (but without having positive allergy tests to wheat). It seems to be a very under-researched area, but, anecdotally, seems like it is going on in some of us with gluten issues who seem to be "super sensitive." I will report back (and probably post on my blog on here) when I have more info. on this and can synthesize it so it makes sense.