Possible celiac? Please help!

[mondaydonna]

Hello! I'm looking for some further insight into whether or not I should continue looking into celiac as an answer to my symptoms. I'd appreciate any input. 

I am 26 F, always been thin. Diarrhea/loose stool and occasional constipation has always been my norm, I'd never thought otherwise until a doctor mentioned celiac to me after a consult about a rash I've been getting:

In July I broke out in a symmetrical, itchy rash pretty much everywhere. I was told it was contact derm and it mostly went away with prednisone. In August, a painless twitch started in my lower left belly. Around this time, I had two intense days of stomach pain/dizziness after eating some pasta and pizza (this pain had happened to me in the past, too, but I paid more attention this time because of the stomach twitch). No crazy bloating or anything, but I had my usual diarrhea 3x the next day, and then like 2x a day for the next week (loose stool and diarrhea, and days of constipation out of nowhere are my norm)

About a week later, I ate a sandwich and my mouth became itchy. Then, I woke up with the same rash from July all over. I suspected a possible issue with gluten so I started avoiding it. After a video consult, the doctor mentioned celiac and ordered me a blood test. About 5 days later, I went in for the test. I was not told by the doctor that I needed to be consuming gluten at the time of the test. This could totally have been my bad, but I'm a bit frustrated that I wasn't made aware of that. At the time of testing, I hadn't eaten gluten for about 2 weeks. 

My Celiac Disease Comprehensive Panel came back negative. Here are my two results:

-Tissue Transglutaminase AB, IGA: <1.0

-Immunoglobulin A: 159

Since I started avoiding gluten, my rash has mostly gone away, and the twitching in my stomach has stopped. To me, the rash looks exactly like many of the pictures online of DH. 

A bit about the rash:

It's symmetrical and itchy. It's on both hips/thigh/groin area, both armpits (but worse on one). On my neck/face, around my mouth, knees, ankles, wrists, and hands.

 

The doctor said the blood test I received is accurate, but I'm but sure if I'm convinced I should rule out celiac? This is just a random doctor on the Galileo app, so I don't actually really know them. 

Am I crazy? Should I continue looking into celiac with another physician? Maybe this is just a gluten intolerance, or something else entirely, but I'd really like to know to what extent I need to avoid gluten, if at all. 

Thank you so much!!

[mondaydonna]

Also wanted to note:

The CBC panel that I got that the same time as the celiac panel shows that I am not anemic. Do you have to be anemic to have celiac? 

[mondaydonna]

Also, if I were to re-test, how long should I be eating gluten for everyday before I could get an accurate result? 

[Scott Adams]

You don't need to be anemic to have celiac disease, although it can be a fairly common symptom. Unfortunately you should not have gone gluten-free before the tests, and having done so could definitely have skewed your results and possibly created false negative results.

Did you notice any symptom improvements since you've been gluten-free? It may be too early yet, but most people with celiac disease who have symptoms do notice improvement fairly soon after going on the diet.

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[mondaydonna]

Thank you for the reply! 

Yes, since going gluten free my rash has gotten better and is almost gone. The twitching in my stomach is gone. My diarrhea/constipation are pretty much the same for now, maybe slightly less diarrhea. 

I'm wondering if I should retest after eating gluten for several weeks. 

Also, is there a different, more in-depth blood test I could ask for? 

[mondaydonna]

Additionally, I've always had very abnormal menstrual cycles, and I have pretty severe depression (I take an SSRI). 

I'm not sure if these are related to celiac but figured i would mention!

[trents]

Since you had already cut back on gluten you cannot trust the blood work that was done to check for it. Mayo Clinic guidelines are two slices of wheat bread or the gluten equivalent daily for 6-8 weeks leading up to the blood draw. You symptoms certainly align with celiac disease or possibly NCGS (Non Celiac Gluten sensitivity). 

Yes, depression and other mental health problems have a correlation with celiac disease, mostly due to vitamin and mineral deficiencies that accrue with long term, untreated celiac disease.

[mondaydonna]

30 minutes ago, trents said:

Since you had already cut back on gluten you cannot trust the blood work that was done to check for it. Mayo Clinic guidelines are two slices of wheat bread or the gluten equivalent daily for 6-8 weeks leading up to the blood draw. You symptoms certainly align with celiac disease or possibly NCGS (Non Celiac Gluten sensitivity). 

Yes, depression and other mental health problems have a correlation with celiac disease, mostly due to vitamin and mineral deficiencies that accrue with long term, untreated celiac disease.

Thank you so much for this information! The doctor and I discussed this and they are reordering the test. I'm going to consume gluten for 6-8 weeks and try again. 

Thank you again

[Scott Adams]

Let us know how it goes...

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[mondaydonna]

2 minutes ago, Scott Adams said:

Let us know how it goes...

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Thank you! The test I got, and the test I will be getting again in 8 weeks has these two results:

Tissue Transglutaminase AB, IGA

Immunoglobulin A

 

Is that the correct test to be getting? I'm a bit overwhelmed by the different tests and the different names of all of them...

[trents]

9 minutes ago, mondaydonna said:

Thank you! The test I got, and the test I will be getting again in 8 weeks has these two results:

Tissue Transglutaminase AB, IGA

Immunoglobulin A

 

Is that the correct test to be getting? I'm a bit overwhelmed by the different tests and the different names of all of them...

Those two are the bare minimum of tests that should be run.

[Wheatwacked]

Since the rash you have seems to be gluten related, it might be easier to find a dermatologist familiar with the technique to biopsy for dermatitis herpetiformis (adjacent to the rash), maybe saving weeks of gluten challenge.  A positive biopsy for DH is a positive for Celiac, with or without other symptoms.  But you describe a series of symptoms that are obviously gluten related.  Once you remove gluten the immune response decreases, without gluten you don't have the Celiac response, but the antibodies for DH persist in the skin as long as the rash.  Ingesting food with iodine will increase the rash for many.  Dermatitis herpetiformis is a chronic pruritic autoimmune blistering disorder associated with gluten sensitivity.  Iodine is known to exacerbate DH.

As an autoimmune disease your first defense is to as quickly as possible get your vitamin D level up to normal 200 nmol/L (or 80 ng/ml depending on the measurements your lab uses).

Quote

Dermatitis herpetiformis (DH) is a rare skin disease that is associated with a variety of autoimmune diseases including Hashimoto's thyroiditis (HT). The prevalence of HT varies from 5% to 20% in different studies among patients with DH. DH is the skin manifestation of celiac disease (celiac disease). Direct immunofluorescence (IF), demonstrating IgA granular deposits localized either in the dermal papillae or along the basement membrane in the perilesional skin, is the gold standard for diagnosis of DH.  Serological marker of dermatitis herpetiformis in hypothyroidism due to Hashimoto's thyroiditis

With low D and avoiding iodine you are open to either Hypo or Hyperthyroidism.

Some have found direct sunlight on the rash can help alleviate it.  It makes sense because UV light has a sterilizing effect and maybe the Infrared has a drying effect.

 

Vitamin D and the Immune System

[Wheatwacked]

         Vitamin D And Your Immune System If you have been diagnosed with an autoimmune disease, it is possible that low Vitamin D levels may be playing a role in your condition, so be sure to have your physician check your levels and aim for 60-90 ng/mL .

[mondaydonna]

3 hours ago, Wheatwacked said:

Since the rash you have seems to be gluten related, it might be easier to find a dermatologist familiar with the technique to biopsy for dermatitis herpetiformis (adjacent to the rash), maybe saving weeks of gluten challenge.  A positive biopsy for DH is a positive for Celiac, with or without other symptoms.  But you describe a series of symptoms that are obviously gluten related.  Once you remove gluten the immune response decreases, without gluten you don't have the Celiac response, but the antibodies for DH persist in the skin as long as the rash.  Ingesting food with iodine will increase the rash for many.  Dermatitis herpetiformis is a chronic pruritic autoimmune blistering disorder associated with gluten sensitivity.  Iodine is known to exacerbate DH.

As an autoimmune disease your first defense is to as quickly as possible get your vitamin D level up to normal 200 nmol/L (or 80 ng/ml depending on the measurements your lab uses).

With low D and avoiding iodine you are open to either Hypo or Hyperthyroidism.

Some have found direct sunlight on the rash can help alleviate it.  It makes sense because UV light has a sterilizing effect and maybe the Infrared has a drying effect.

 

Vitamin D and the Immune System

Thank so much for this info. The rash is currently very tame/mostly gone. I've been back eating gluten again for 3 days (mostly organic gluten which doesn't seem to bug my stomach as much). 

I'm not sure how to convince my doctor for this referral, or how to find someone who would specifically biopsy for DH, but I will check it out! This will be a long 8 weeks if I do go the blood test route...

If the rash is almost gone/barely visible, it might be tricky getting to a derm when it is visible and able to be biopsied. It's kind of hard to predict when it will come back full-force. It feels it comes out like my system builds up a lot of gluten or something. 

I will keep all of this in mind  thank you! I've also been taking vitamin D supplements for the last week or so. 

[Scott Adams]

How to convince...there is this:

 

[mondaydonna]

17 minutes ago, Scott Adams said:

How to convince...there is this:

 

Thank you!