Could it really be coeliacs?

[Pondering]

I’ve posted just about everywhere sorry for anyone who has read this arduous tale already!

I started with a blistering rash on one upper thigh at the end of July it was very painful I thought it might be shingles then it spread to both thighs and the blisters merged together and got darker and darker. It ended as a non blanching purple rash I got tested for HIV which was negative then derm did a punch biopsy as they couldn’t identify it. 
 

A week after that rash stopped hurting I had random episodes of diarrhoea and vomiting then what the derm described as dermatitis herpetiformis all over it looked a bit like lichen nitidus but the blisters were a bit bigger and it covered my hands arms scalp face shoulders legs neck ears. It seemed to me to be caused by the sun but derm disagrees. My hair started falling out, the skin on my chest and back looked like severe burns and the skin peeled, the skin on my back somehow has done the same thing again, I also get face and chest flushing randomly. No fevers. 

I’ve started over the past week getting joint pains in thumbs and wrists, at one point I felt like I’d broken my thumb in my sleep but that got better, very fatigued and I just feel so incredibly weak and slow moving. I’m 30 female, usually fit and healthy with a perfect bmi never had any health problems other than asthma which is well controlled.
 

I had severe abdominal pain and projectile vomit last week I’ve been referred to gastro and I’m terrified of eating full meals. I’ve had bloods done and they said my body is not absorbing nutrients which is another sign of coeliacs however the Iga blood came back very normal 0.5 (normal range -15.0)

 

All of this has happened in one month, how can I suddenly get such a severe reaction to gluten? Are they wasting time looking at coeliacs? The abdo pain I got last week was something else, worse than contractions but felt like them if that makes sense. It was right in the centre around my belly button. I just can’t believe I would suddenly get such severe symptoms, and it started with a rash rather than abdo problems.
 

My biopsy results will hopefully help the mystery but I wouldn’t be surprised if they drew up a blank also. 

[Scott Adams]

It certainly could be celiac disease, especially if you have DH, which is the skin form of the disease. Did you get an official diagnosis by a dermatologist for DH after a skin biopsy? If so, then yes, you likely will need to go gluten-free after all testing is done.

Do you have all of your blood test results, and if so, can you share them here with the reference ranges? TtG is the standard blood test for celiac disease, and I can tell which one you go by your post.

Also, were you eating gluten daily for at least 6-8 weeks before your celiac disease or DH tests? If not, you may get false negative results.

[Pondering]

24 minutes ago, Scott Adams said:

It certainly could be celiac disease, especially if you have DH, which is the skin forum of the disease. Did you get an official diagnosis by a dermatologist for DH after a skin biopsy? If so, then yes, you likely will need to go gluten-free after all testing is done.

Do you have all of your blood test results, and if so, can you share them here with the reference ranges? TtG is the standard blood test for celiac disease, and I can tell which one you go by your post.

Also, were you eating gluten daily for at least 6-8 weeks before your celiac disease or DH tests? If not, you may get false negative results.

Hi Scott thanks I appreciate your response.

The rash they biopsied is unknown at the moment, it was never thought to be DH by the dermatologist, it was significantly different to any DH rash I’ve seen so I don’t think the starter rash was that. I do have a Mumsnet thread called ‘what is this rash? Pic included’ that has the photos and also the blood results. It was only the following week when I returned with another rash that he identified that particular one as DH. He didn’t do a biopsy of the suspected DH rash. My worry with the DH diagnosis of that rash is that is was everywhere rather than how it’s described online, knees, elbows etc. 
 

for the blood test it is named as tissu transglutaminase iga so I guess it’s the TtG one? Results were

0.5 u/ml (normal range : - 15.0) 
 

I eat gluten constantly I’ve not noticed a link with a heavy gluten meal and health problems, even the rashes don’t appear to be linked to anything in particular. The burn on my back just appeared without ever been in any sunlight. It’s all so random. I’ve done two stool samples one is to check for calprotectin as my brother has crohns and the other something to do with coeliacs. Those results should be back next week. 

 

[Wheatwacked]

What is your vitamin D blood plasma level?

[trents]

Unfortunately, they did not do full celiac panel antibody test. The tTG-IGA misses 20% of white Europeans and 50% of those of African decent who actually do have celiac disease. There are a number of other antibody tests that could have (and should have) been ordered. If the rash is not actually DH then you could have NCGS instead of celiac disease. They share many of the same symptoms but there is no test for NCGS (which is 10x more common than celiac disease). celiac disease must first be ruled out.

[Pondering]

1 hour ago, Wheatwacked said:

What is your vitamin D blood plasma level?

I don’t think they’ve done that one so I’m not sure sorry. What would the high vit D test be for? The hospital were first checking for vasculitis or something vascular sounding. I only have the recent blood results that were done at a local health centre on my nhs app. I’m going to ask for a copy of the tests the hospital have done if the biopsy doesn’t bring anything up as I’m changing trusts for the gastro doctor. 

[Pondering]

52 minutes ago, trents said:

Unfortunately, they did not do full celiac panel antibody test. The tTG-IGA misses 20% of white Europeans and 50% of those of African decent who actually do have celiac disease. There are a number of other antibody tests that could have (and should have) been ordered. If the rash is not actually DH then you could have NCGS instead of celiac disease. They share many of the same symptoms but there is no test for NCGS (which is 10x more common than celiac disease). celiac disease must first be ruled out.

Thank you for your response. Coeliacs has only been on the table for the past 2 weeks once he saw the suspected DH rash is when he requested the blood before that they didn’t have a scooby. I’ve no idea what he will suggest testing for next I hope to have a better understanding of the next steps by next week. I suppose I just need to wait and be patient. 
 

[Wheatwacked]

It is a common factor in your group of symptoms. Low D allows the autoimmune system to run amuck.

It made a tremendous difference for me. It took 10,000 IU (250 mcg in metric) a day from April 2015 to 2018 to raise my level to 47 ng/ml. Another 2 years to reach 80 ng/ml. It took only three weeks of not supplementing to go from 80 down to 72 ng/ml. And during that time I was in sunshine more than two hours a day which is new for me. My son (celiac since weaning in 1976) is an Ocean Lifeguard his blood D level is low. Dr told him to start taking vitamin D. 400 IU a day (Cruel joke). When reading these articles beware that some people measure nanograms and some measure nanomoles. The numbers are similar, but not the same. Vitamin D (25-Hydroxyvitamin D) ng/ml ↔ nmol/l Conversion Table

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"In particular, studies have investigated possible roles of vitamin D as a key modulator of inflammation and immune mechanisms and of the intestinal mucosa barrier. In this regard, vitamin D has been considered as a factor that affects different conditions such as immune-mediated diseases. "Possible Role of Vitamin D in Celiac Disease Onset

 

Regarding safety:

"Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL." Mayo Clinic Proceedings: Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

Quote

 

Take-Home Messages

• Vitamin D can be spontaneously synthesized from cutaneous cholesterol upon UVB exposure and has pleiotropic effects on the immune system.
• Vitamin D, after metabolized into a biologically active form...can initiate gene transcription and exert its immunomodulatory effects.
• Both environmental trigger (insufficient sunshine exposure) and genetic factor (VDR polymorphism) could contribute a poor vitamin D status.
• Vitamin D deficiency (low serum levels of 25(OH)D) is prevalent in multiple autoimmune diseases, e.g. MS, TIDM, and SLE.
• Because the vitamin D status is highly associated with the risk of autoimmunity, vitamin D has been implicated in prevention and protection from autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review

 

 

[knitty kitty]

@Pondering,

DH is photosensitive.  DH will get worse in the sun.  I have it.  

You might like reviewing other photos of DH in our photo bank...

Your state of malnutrition will effect your ability to make antibodies for Celiac Disease.  The blood test you took may be reflecting the fact your body can't make antibodies because it doesn't have enough vitamins and minerals.  Do get the complete panel of Celiac tests.  And consider having a genetic test to look for common Celiac genes.  

Hope you feel better soon!

[Scott Adams]

There is a condition called non-celiac gluten sensitivity, which ~10x more people have than celiac disease, however, there currently isn't a test for this--it was only recently revealed to be an actual condition. If your tests end up negative, it might be worth trying the gluten-free diet for a few months to see if you get symptom relief.