If I Don't Opt For Formal Diagnosis?

[PointBlankGluten]

Good day from Australia and Merry Christmas to all.

This is my first post although I've been reading on here for a long time.

I'm sorry if I ask something very obvious but I couldn't find any information in searches.

I believe I have Dermatitis Herpetiformes. My GP disagrees as my celiac blood panel was negative and the blister rash is on my chest and back and not elbows. I also have no gastro symptoms.

My gluten free journey started when a natural therapist that I saw out of desperation to help with my 5 yr old son's behavioural issues put him on a gluten free diet. To support him I joined him on the diet and discovered how much better I felt for it.

My fatigue improved significantly but for some reason my psoriasis got worse.

I've been mostly gluten free for about 18 months now but my mother and other family members don't take my gluten issues seriously thinking of it as a fad. Their lack of support doesn't bother me so much as the family dinners where I get Glutened.

For some reason the blister rash only appeared for the first time after 6 months of being already gluten free when I had a take away pizza that was meant to be gluten free but wasn't. I could tell by the rubbery base and the dough consistency and the immediate fatigue that set in.

About 4 days later I started itching and stinging uncontrollably and thenof course the fluid filled blisters appeared, most of which left purple/white scars.

Since then whenever I get gluten in I get the rash and it seems to be getting worse every time.

It does disappear after being fully gluten free again.

Going back in my family history and my late father's early passing, colon and stomach issues and my grandma's IBS and constant diarhea it doesn' take a lot to see the link.

My question is : I already have a negative celiac blood screen and a GP who is irritated with me . I don't have it in me to fight a battle to get a diagnosis. The treatment would be the same anyway - go gluten free for life.

However : what about nutritional deficiencies and absorption issues? Is that something that I should be concerned about?

Are there reliable tests for nutritional levels that I can do irrespective of my Celiac concerns?

I don't mind going back on gluten if it's going to mean getting a diagnosis but I just don't believe there's enough for a GP to go on as I'm so asymptomatic according to their rule books.

Any advice or support greatly appreciated.

[1desperateladysaved]

Welcome Point Blank!

 

I did a Spectra Cell test for nutrient levels.  In the US it recently met the criteria to make it allowable to cover for Medicare and therefore most private insurance cover it.  I don't know if it is available in Australia.  If you are feeling well, and recovering, you probably don't need to check the levels. If you spend a whole lot of money on supplements, it can help you channel your funds to the most needed nutrients for you.   The lessening of fatigue is a very good sign! 

 

Are you on any vitamins to make sure you are getting enough and to help heal?     My Functional Medicine nurse automatically gives a multi-vitamin and vitamin B for celiac.  She also recommended digestive enzymes and probiotic.

 

If you can find a doctor  to listen to you, it would be a real blessing.  You might try making a post on the forum to ask if anyone in your area knows of one that  Knows  about Celiac.  A rash aggravated by gluten sounds suspicious to me. 

 

I set up my electric skillet and utensils anywhere in the house ( and at hotels when traveling) to avoid contamination problems.  Making ones own food sure beats the consequences of getting some gluten by accident.

 

Best wishes on your trek,

 

I hope you can get rid of that rash,

 

D

[frieze]

was your blood testing after being gluten free?

[nvsmom]

If you go back on gluten, perhaps try biopsying beside the rash for a dh diagnosis.  Not everyone with dh will have a positive blood test... If you get a referral to a dermatologist, then you won't be bothering your GP anymore.  LOL 

 

An endoscopic biopsy might be something to consider, although you'll have to pester the GP for a GI referral for that.  The gluten challenge is generally shorter for that than for blood work (2 to 4 weeks versus 8 to 12 weeks), and biopsies sometimes catch celiacs who are serologically negative.

 

Another thing to check is whether you are IgA deficient. Did the GP run the total serum IgA? About 5% of celiacs are too low in IgA to test accurately in the IgA based tests (like tTG IgA, DGP IgA, and EMA IgA) so they need to use IgG based tests (tTG IgG, DGP IgG, EMA IgG) instead or just rely on the biopsy.

 

If you decide you are done with testing, then just ignore all that.  LOL  The nutrients that celiacs are often low in are: D, A, B12, calcium, iron, ferritin, magnesium, zinc, potassium, copper... I might be forgetting something there.  Malnutrition can cause some other issues like low growth hormones too; IGF-1 would check that. Some of us have slower adrenals after years of misdiagnosis and sometimes need some help with that. Be aware too that celiacs are more prone to getting other autoimmune diseases, thyroiditis/Hashimoto's and type 1 diabetes are the most common... you might want to keep an eye on that.

 

If you have children, you will want to watch them closely and probably have them tested too. celiac disease is genetic, and does not always present with symptoms, so I would go with better safe than sorry.

 

As for those family dinners, you might want to start bringing your own food or a dish that can be shared which you could fill up on. If the family questions you on it, just state that you have been gluten in people's homes in the past and since it takes a few weeks to recover, you felt it was best to bring food so you could still enjoy everyone's company.  Be as polite but firm as you can.

 

I have a few family members who make it very clear that they doubt the effect that gluten has on me but they are not in my daily life so I try to let their looks just slide off my back... People don't change unless they want to.

 

Happy Boxing Day from Canada.

[BelleVie]

I actually think that it's a good idea to get your nutrient levels and bone density checked, even if you are feeling well. I didn't think I'd have too many issues, but my nutrient tests showed very low vitamin D. Had I not taken that test, I wouldn't be on supplements now. Also, because I had a diagnosis, I went ahead with a DEXA scan to check my bone density. As it turns out, I have osteoporosis in my lower back, DEFINITELY caused by celiac. Probably wouldn't have had that checked out without a diagnosis. Even if you end up not getting a formal diagnosis, I really hope you get these things checked out! Also, (I'm in a hurry and did not have time to read all of the comments in detail, so apologies if somebody else already mentioned this), the next time you have an outbreak of the rash, you could get it biopsied to check for DH, which, if positive, would give you your diagnosis. 

[GFinDC]

I suggest you skip the testing and go 100% gluten-free.  We have seen other people post about having the beginning stages of DH and then doing the  gluten challenge.  Their DH became much worse than before and took a long time to settle down again.  DH is nothing to play around with!  Check out the DH section of the forum for more info.

[BelleVie]

Yes, I agree GFinDC. No need to cause a terrible outbreak. That being said IF the OP has a slip up and accidentally has a break out of the rash, it might be a good idea to get it biopsied.