NCGS Hives?

[cluelesslycontaminated]

Hello!

I am new to this site and I have been debating whether to post my situation or not, but here goes! 

Since early March, I have been having daily hives. Typically they present as an itchy area of skin (sometimes showing small bumps), and when I scratch them they become more pronounced and the area becomes red and puffy. They happen just about anywhere on my body, even though I take an antihistamine daily. I had also been experiencing dermatographia, some digestive issues and bloating. I decided to start with going to a GP to find some answers. They suggested bloodwork. I had been attempting to research similar stories/symptoms, leading me to ask if they could include a gluten panel. The bloodwork was done in June, and all of the tests except the gluten panel came back normal. Based on the results of the gluten panel, I was told I did not have to eliminate gluten, but should limit it to some point. I asked if I could be having an allergic reaction to wheat. I was told no, based on the absence of elevated levels of something else in the bloodwork (which I forget). Craving relief, I cut gluten out completely for 6 weeks. During this, my symptoms lessened significantly. I even had days of no hives at all. I recently tried eating gluten intentionally again, and it has brought back my symptoms. At least I think it is gluten that is the culprit. That leads me to why I am posting. Other than the digestion issues/bloating, which were not extremely significant, but noticeable nonetheless, I am not convinced my skin symptoms are typical of a gluten sensitivity. I am planning on going to an allergist for formal skin testing, though it is difficult to get an appointment at the place I am trying to go to, so it will be a bit before I get that testing done. Has anyone experienced anything similar? 
Also, I would post pictures of my gluten panel/skin issues but I cannot seem to figure out how to do it just yet…

[trents]

Welcome to the forum, Cluelesslycontaminated!

First of all, whoever told you to cut back on gluten but that you don't have to eliminate it is full of bologna! If you have a problem with gluten, which means you either have celiac disease (gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity), you need to eliminate it from your life and not just reduce it.

But before I say anything else, please post the celiac panel test names, the reference ranges for negative vs. positive, and your score for the individual tests performed in the celiac panel. If we have the numbers, we can advise you more specifically. To post this information you would need to start a new post. You only have a very short time window to edit a post already made. This is a security provision.

[cluelesslycontaminated]

12 minutes ago, trents said:

Welcome to the forum, Cluelesslycontaminated!

First of all, whoever told you to cut back on gluten but that you don't have to eliminate it is full of bologna! If you have a problem with gluten, which means you either have celiac disease (gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity), you need to eliminate it from your life and not just reduce it.

But before I say anything else, please post the celiac panel test names, the reference ranges for negative vs. positive, and your score for the individual tests performed in the celiac panel. If we have the numbers, we can advise you more specifically. To post this information you would need to start a new post. You only have a very short time window to edit a post already made. This is a security provision.

Thank you for your response! I attempted to try to post again with the pictures, but I only see options to bold/italic/underline text, or insert an emoji or link. I am on my phone, which may be why? I typed up my blood work results:

 

t-Transglutaminase (tTG) IgA:  <2

(Negative 0-3, weak positive 4-10, positive >10)

 

Deamidated Gliadin Abs, IgG: 2

(Negative 0-19, weak positive 20-30, moderate to strong positive >30)

 

Antigliadin IgG (native): 21

(Negative 0-19, weak positive 20-30, moderate to strong positive >30)

 

Note: Suggestive of nonceliac gluten sensitivity.

 

[trents]

The numbers do not suggest celiac disease but the weak positive Antigliadin IgG does suggest gluten sensitivity or NCGS. Although the two gluten disorders have crossover in their symptoms, the difference is that with celiac disease there is an autoimmune reaction when gluten is ingested that causes inflammation in the villous lining of the small bowel. Over time, this inflammation wears down the villi such that there is much less efficiency in the absorption of vitamins and minerals from the food we eat. Over the years, this results in other nutritional deficiency medical problems. NCGS is 10x more common than celiac disease. The antidote for both is the same: lifelong avoidance of gluten. And I think you have already discovered that even occasional exposure to gluten gives you significant distress. Keep in mind, however, that some experts in this field believe that NCGS can be a precursor to developing celiac disease.

This might be helpful to you in really getting on top of the gluten free lifestyle:

 

[cluelesslycontaminated]

19 minutes ago, trents said:

The numbers do not suggest celiac disease but the weak positive Antigliadin IgG does suggest gluten sensitivity or NCGS. Although the two gluten disorders have crossover in their symptoms, the difference is that with celiac disease there is an autoimmune reaction when gluten is ingested that causes inflammation in the villous lining of the small bowel. Over time, this inflammation wears down the villi such that there is much less efficiency in the absorption of vitamins and minerals from the food we eat. Over the years, this results in other nutritional deficiency medical problems. NCGS is 10x more common than celiac disease. The antidote for both is the same: lifelong avoidance of gluten. And I think you have already discovered that even occasional exposure to gluten gives you significant distress. Keep in mind, however, that some experts in this field believe that NCGS can be a precursor to developing celiac disease.

This might be helpful to you in really getting on top of the gluten free lifestyle:

 

Thank you for the information and the link! I appreciate your help. I had not thought of NGCS as a possible precursor to celiac disease, but as you said, the gluten free lifestyle is the answer. 

[trents]

We actually know more about the immune system pathway of celiac disease than we do for NCGS. One thing you might consider if you are interested in exploring the matter further is to have genetic testing done to see if you have either of the two or three genes tied to the development of celiac disease (I think a third one has recently been discovered). About 40% of the population has one or more of these genes but if you have none of them then you can rule out celiac disease. The development of celiac disease requires the genes and some sort of biological stress event, like a viral infection) to "turn on" the genes. Many who have the genetic potential therefore never develop active celiac disease. But at the end of the day the antidote is the same: avoiding gluten.

[knitty kitty]

@cluelesslycontaminated,

The antihistamines you've been taking have probably affected your blood tests for Celiac Disease.  The release of histamine from mast cells is part of the immune reaction in Celiac Disease.  Antihistamines block this "fire alarm" or call to action of the immune system, resulting in low antibodies.     

You may want to consider continuing the gluten challenge for six weeks without taking antihistamines and having another Celiac panel done. 

Skin symptoms can be symptoms of CeD that commonly happen outside of the gastrointestinal tract.  Chronic hives and hives due to B12 deficiency occur in CeD. 

"There is growing evidence about the predisposition of celiac disease patients to develop several skin disorders, including psoriasis, atopic dermatitis (AD), urticaria, alopecia areata (AA), chronic ulcerative stomatitis, and dermatitis herpetiformis (DH), the only one with a demonstrated gluten-related immune mechanism."

Extra-Intestinal Manifestations of Celiac Disease: What Should We Know in 2022?

https://www.mdpi.com/2077-0383/11/1/258

And another...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6895422/

I've had CeD a very long time with lots of accompanying skin conditions including DH, pellagra, and hives.

Do get further testing.  Genetic testing or another gluten challenge without antihistamines.  

[trents]

@knitty kitty, can you link a specific study that ties antihistamine therapy with lower celiac antibody test scores? This is new information to me.

@cluelesslycontaminated, if you ever have celiac antibody testing done again, make sure they include "total serum IGA" in the panel. When total serum IGA is low it will drive down other IGA scores and can cause false negatives. This we do know.

[captaincrab55]

Welcome  Cluelesslycontaminated,  I suffered with hives and tummy pain from an infant to age 56 as well as pimples that started when I was 12 that were quite often symmetrical in nature.  In a period of 30 year I went to 4 different Dermatologist.  The last one tested me for Dermatitis Herpetiformis(DH) on the first visit. Two weeks later the test came back positive.  DH is a form of celiac disease and there is a section on here devoted to it.  Malt was a super trigger for hives with me.  Good Luck!

 

[knitty kitty]

Sure, @trents,

Effects of antihistamines on innate immune responses to severe bacterial infection in mice

https://pubmed.ncbi.nlm.nih.gov/21346365/

Antibodies in celiac disease: implications beyond diagnostics

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4003135/

Regulatory effects of antihistamines on the responses to staphylococcal enterotoxin B of human monocyte-derived dendritic cells and CD4+ T cells

https://www.sciencedirect.com/science/article/abs/pii/S0923181108001229

 

[trents]

43 minutes ago, knitty kitty said:

Sure, @trents,

Effects of antihistamines on innate immune responses to severe bacterial infection in mice

https://pubmed.ncbi.nlm.nih.gov/21346365/

Antibodies in celiac disease: implications beyond diagnostics

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4003135/

Regulatory effects of antihistamines on the responses to staphylococcal enterotoxin B of human monocyte-derived dendritic cells and CD4+ T cells

https://www.sciencedirect.com/science/article/abs/pii/S0923181108001229

 

Not having a background in the disciplines related to the cited research limited my understanding of some of the material but my overall impression was that none of it directly applies to the question at hand. And the second link doesn't even address antihistamine use.

[RandyH]

From your description you almost certainly have celiac disease. It also sounds like you are describing During's disease which is a skin disease and is also a part of celiac disease. Or at least a two are linked together. My suggestion to you would be to cut out all gluten from your life and you should see all your symptoms Go away in a short time. I would advise you to do a lot of research to avoid cross-contamination and mis labeling so that you don't get yourself contaminated and end up being miserable and sick. The app called gluten-free Scanner or Gluten Free Scanner is a big help at the grocery store, also find me gluten free is also nice to use for eating out. Get used to asking for the gluten-free menu every time you go out. And make sure you let your server know that you are a celiac and to let the cooks know. This will help minimize the risk of cross contamination, but in reality you'll never be guaranteed to have a 100% gluten-free meal when eating out. I will warn you that the longer you stay gluten free the higher the risk of having a a celiac attack even with the smallest amount of cross contamination. Also note that my test came back as inconclusive for the blood work but should a positive result for the stool sample. The second time they ran the blood work. It came up positive for celiac. I hope this information helps. Sorry about your bad luck but if I can manage this anyone can.

[knitty kitty]

Mast cells are part of the immune response.  They release histamine when presented with an antigen like gluten. 

Mast cells also call in immune cells that make antibodies like tTg IgA when histamine is released.

Antihistamines affect the release of histamine from mast cells.  

If the mast cells release of histamine is affected by antihistamines, then the other immune cells don't get called in and don't make specific antibodies.  Hence, lower tTg IgA antibodies.

[trents]

28 minutes ago, knitty kitty said:

Mast cells are part of the immune response.  They release histamine when presented with an antigen like gluten. 

Mast cells also call in immune cells that make antibodies like tTg IgA when histamine is released.

Antihistamines affect the release of histamine from mast cells.  

If the mast cells release of histamine is affected by antihistamines, then the other immune cells don't get called in and don't make specific antibodies.  Hence, lower tTg IgA antibodies.

That suggests to me that histamine therapy is an antidote for celiac disease. If the immune cells don't get called in there is no inflammation and no damage to the villi.

[knitty kitty]

No, it's not as simple as that.  

Antihistamines can tamp down some of the symptoms, but the immune system is still going to be activated.  Other cells in the immune system will still get activated by different methods.  

Antihistamines are like putting a finger in the dike.

[trents]

1 hour ago, knitty kitty said:

No, it's not as simple as that.  

Antihistamines can tamp down some of the symptoms, but the immune system is still going to be activated.  Other cells in the immune system will still get activated by different methods.  

Antihistamines are like putting a finger in the dike.

Of course. And I suspected you did not mean to imply otherwise. I just am not sure how much effect this would actually have on lower the antibody test numbers. With all the years I've participated in this forum, I'm thinking I would have run across that antibody suppression effect mentioned in a post by now if it was significant. Someone needs to do a study on this with real people so we can get some quantification because I am sure there are a lot people on antihistamines who get tested for celiac antibodies.

Edited August 7, 2023 by trents

[knitty kitty]

I agree more research needs to be done.

I'm curious about the different antibodies being produced and why some people have negatives on tTg IgA, but positive anti gluten IgG.

@cluelesslycontaminated posted that the skin symptoms had started in March.  Were antihistamines started at that time? 

The antihistamines (and PPI's) might affect the production of tTg IgA antibodies but not the Dgp IgG because those antibodies are produced by different immune reaction processes by different immune cells.  I'm not finding a lot of studies being done on this, but we've had a plethora of new members with the same dilemma.

Dermograhia can be caused by low Vitamin D and B Complex vitamins.  

[cluelesslycontaminated]

Hello again!

Sorry I have not replied recently, had some things come up, and I knew this would take me a bit of time. I made a Google Doc to share some pictures of what is happening with my skin. https://docs.google.com/document/d/1_4EKndmsVlr45t-j_WBPvB03bHJwhpVu6xBP6IlNw7g/edit?usp=sharing 

These are just a few pictures. I also get the hives(?) on many different parts of my body.

Last Monday, after 6 weeks of avoiding gluten, then a week where I had two intentional small exposures (skin issues next day), I decided to do my own experiment and really eat a gluten-ful meal. I had about 4 flour tortillas worth of Taco Bell, and boy do I regret it. The next day, about 20 hours later, I became itchy all over my body and had significant hives(?), especially on my lower back. I had not taken an antihistamine that day until after that began (I wanted to try not taking it). After that day, I continued to take an antihistamine (I had not missed any other days) and experienced some itchiness, but nothing all too bad until the 4th day after Taco Bell, when my wrists began to freak out. They calmed and flared on and off until today (4 days later), and I have not had much issue with hives(?) today. On the other hand, my stomach has been wrecked since that 4th day (when the wrist hives began), including bloating, discomfort, and bathroom issues. I am hoping that resolves itself soon, since I have avoided gluten since eating the Taco Bell.

@knitty kitty I have been taking a daily antihistamine consistently for almost 3 years due to outdoor allergies (previously Claritin for about two years, then Allegra for about a month, and currently Zyrtec).

[knitty kitty]

@cluelesslycontaminated,

Sounds like DH to me.  Symptoms often can occur days after gluten (or iodine) exposure as antibodies build up in the skin.

Have you compared your photos with those in the DH photo bank?

  

 

Niacin (the flushing form) can help with skin issues like DH.  B12 and Vitamin C help clear histamine.  

Have you looked into a low histamine Paleo diet?  

[trents]

I'm no expert but those pics look like DH to me. There are obvious blisters/pustules in the bumps. If you have DH, you have celiac disease, not NCGS. Celiac disease is the only known cause for DH. If you do have DH, I think that would trump all other tests when it comes to deciding between celiac and NCGS. That's my take on it anyway.

[RandyH]

4 hours ago, cluelesslycontaminated said:

Hello again!

Sorry I have not replied recently, had some things come up, and I knew this would take me a bit of time. I made a Google Doc to share some pictures of what is happening with my skin. https://docs.google.com/document/d/1_4EKndmsVlr45t-j_WBPvB03bHJwhpVu6xBP6IlNw7g/edit?usp=sharing 

These are just a few pictures. I also get the hives(?) on many different parts of my body.

Last Monday, after 6 weeks of avoiding gluten, then a week where I had two intentional small exposures (skin issues next day), I decided to do my own experiment and really eat a gluten-ful meal. I had about 4 flour tortillas worth of Taco Bell, and boy do I regret it. The next day, about 20 hours later, I became itchy all over my body and had significant hives(?), especially on my lower back. I had not taken an antihistamine that day until after that began (I wanted to try not taking it). After that day, I continued to take an antihistamine (I had not missed any other days) and experienced some itchiness, but nothing all too bad until the 4th day after Taco Bell, when my wrists began to freak out. They calmed and flared on and off until today (4 days later), and I have not had much issue with hives(?) today. On the other hand, my stomach has been wrecked since that 4th day (when the wrist hives began), including bloating, discomfort, and bathroom issues. I am hoping that resolves itself soon, since I have avoided gluten since eating the Taco Bell.

@knitty kitty I have been taking a daily antihistamine consistently for almost 3 years due to outdoor allergies (previously Claritin for about two years, then Allegra for about a month, and currently Zyrtec).

Looks like Duhrings disease or DH. If you have Duhrings you have Celiac Disease. I recommend you do a lot of research on both and continue on a 100% gluten-free diet. It's not fun, nor is it easy but it will get easier the longer you stay gluten-free.

 

[CindyLF]

On 8/6/2023 at 8:53 PM, cluelesslycontaminated said:

Hello!

I am new to this site and I have been debating whether to post my situation or not, but here goes! 

Since early March, I have been having daily hives. Typically they present as an itchy area of skin (sometimes showing small bumps), and when I scratch them they become more pronounced and the area becomes red and puffy. They happen just about anywhere on my body, even though I take an antihistamine daily. I had also been experiencing dermatographia, some digestive issues and bloating. I decided to start with going to a GP to find some answers. They suggested bloodwork. I had been attempting to research similar stories/symptoms, leading me to ask if they could include a gluten panel. The bloodwork was done in June, and all of the tests except the gluten panel came back normal. Based on the results of the gluten panel, I was told I did not have to eliminate gluten, but should limit it to some point. I asked if I could be having an allergic reaction to wheat. I was told no, based on the absence of elevated levels of something else in the bloodwork (which I forget). Craving relief, I cut gluten out completely for 6 weeks. During this, my symptoms lessened significantly. I even had days of no hives at all. I recently tried eating gluten intentionally again, and it has brought back my symptoms. At least I think it is gluten that is the culprit. That leads me to why I am posting. Other than the digestion issues/bloating, which were not extremely significant, but noticeable nonetheless, I am not convinced my skin symptoms are typical of a gluten sensitivity. I am planning on going to an allergist for formal skin testing, though it is difficult to get an appointment at the place I am trying to go to, so it will be a bit before I get that testing done. Has anyone experienced anything similar? 
Also, I would post pictures of my gluten panel/skin issues but I cannot seem to figure out how to do it just yet…

Please research Dermatitis Herpetiformis. My daughter has it and eliminating all gluten (wheat, rye, barley) is critical. DH is associated with Celiac Disease. 

[cluelesslycontaminated]

I see the consensus is DH. That means a skin biopsy, but would it be effective if I’m not currently eating gluten? I’m wondering if I should attempt to get a derm appt asap because I still have an active (yet fading) rash on my wrist, or wait and eat gluten for a period of time before getting it done. 

[knitty kitty]

Get the appointment.  Eat gluten four or five days prior to bring out the rash.  Or...

Foods high in iodine (eggs, dairy, crustaceans) can stimulate DH flares, too.  Or...

Get a genetic test to look for Celiac genes.  Genes don't change, and you don't have to consume gluten beforehand.

[CindyLF]

A Dermatologist can diagnose DH by doing a skin biopsy. When you call for the appointment, ask what you need to do in advance of the appointment. I wish you well.

As an aside, I have Celiac Disease, as does my son and two of his daughters (my granddaughters). My daughter with DH has never had stomach/digestive issues. My point is, gluten intolerance or celiac disease runs in families and affects people differently.