Negative test, many symptoms, doctors don't believe me

[Isablah]

Hi everyone, 

Bit of a long read here. 9 months ago I started to get this stinging rash on my face and my dermat recommended an elimination diet. The rash went away, but came back when only wheat was reintroduced. I decided to cut gluten out of my diet, and that's when my rash went away and I realised a whole host of other symptoms cleared up too:

TERRIBLE excruciating pain in my legs, pigmentation on my face and neck, fatigue, bloating, indigestion, frequent upset tummies, anxiety, increased heart rate, increased bp, I was also on constant steroids because without them I would fall sick with a cold - but finally after three years I was able to come off them after going gluten free.

I consulted a gastroenterologist 2 months after going gluten free, we did a test. He said I hadn't been gluten free long enough for the antibodies to disappear - but it came back negative for celiac. (I did IGA and TTG).

so I came to the conclusion that this is a non celiac gluten intolerance. But I seem to be met with doubt from doctors when I say that it genuinely makes me sick?

I had consulted my dermatologist again, to ask if there was ANYTHING I could use on my face if I eat gluten by mistake - because the rash I get, it burns and stings and sometimes I can't bear it. And he wants to put me on a strong course of antihistamines for 3 months and prescribe ANOTHER elimination diet. I really can't tolerate cutting so many foods beyond gluten out of my diet because at this point I'm absolutely certain, everytime I eat gluten, I fall sick. None of the other items on his list make me sick.

And he's confusing an intolerance with a wheat allergy, and telling me that I'm getting the hives. But I know it's not an allergy because my symptoms do not present immediately - only a couple of hours later, and last a few days after I've eaten gluten. And ofcourse, all of the other symptoms that I've had since childhood. Also please note this was a telephonic consultation because of the pandemic, so he hasn't actually seen me.

I've heard about dermatitis herpetiformis and I'm very confused by the literature I've seen online. Is it a manifestation of celiac disease? Can one have it without having celiac disease? Is it possible to have it with a non celiac gluten sensitivity?

I have so many questions and no answers because doctors right now are just keen on experimenting, and I feel like I'm not being believed when I say gluten makes me sick. One doctor told me it was just STRESS. I mean I clearly have very visible symptoms like the rash. Please help.

After the pandemic I will be getting an endoscopic biopsy, even though my gastro says the blood tests are very sensitive and 95 percent effective.

[trents]

Some good questions. Historically, DH has been a classic marker for celiac disease but now we know that there is more than one gluten-related disease. There is also the thought that DH and other gluten-related health problems may be the precursor to full-blown celiac disease. So it is possible that in time you would test positive on an endoscopy if you continued consuming gluten regularly. I think the important thing to focus on now is that your symptoms are relieved when you eliminate gluten (wheat, barley and rye food products and for some, oats). Now, you would do well to educate yourself on how and where these offending grains are included in everyday consumables by the food industry. For instance, just about all canned soups (including tomato) have wheat in them and so does most soy sauce. Medications and supplements can as well. So there is more to it than just eliminating the macro sources of gluten in your diet. You would, for instance, need to be aware of how gluten winds up in otherwise non gluten containing food by coming in contact with it in storage, transportation, processing and preparation. For example, fries being cooked in the same vat as breaded chicken patties. We call this cross contamination.

Edited December 12, 2020 by trents

[Isablah]

Yep, I have started figuring that out and have cut out just about most things I love. My rule is I just don't eat it if I'm not sure. My concern at this point is to just have some sort of diagnosis to feel validated you know? Because I have family that doesn't really believe this is a problem and still responds with denial. It doesn't really help me to cope with this big change.

Add to that the fact that, there is a bit of a learning curve in the beginning - where despite trying to be extremely careful, once in a while I make a mistake and eat something extremely unassuming and suffer. I had asked my dermatologist to prescribe some pain relief cream for my face just in case, but he's just convinced I need an antihistamine.

Thanks for the response, I guess I hadn't thought about it being something that could progress to celiac

 

[trents]

As you mentioned, for the reason of confirmation, it is good if you can get an official diagnosis. There is a psychological benefit to this as many people find it difficult not to cheat on their gluten-free diet until they do. It can also help convince family and friends but don't kid yourself, there will still be those who would remain unconvinced. Some, even in the medical community, still see gluten-related diseases as the latest fad medical condition. They just can't believe that wheat, which is considered around the world to be the "staff of life," could be harmful.

Edited December 13, 2020 by trents

[Isablah]

Yep. It'll help for personal closure, and getting the treatment I need for DH. But yeah, I suppose over time I can grow to accept that there will be people who still cast doubt.

[RMJ]

For an endoscopy to diagnose celiac disease you must be eating gluten. If you’ve been on a gluten free diet for a while your villi recover and the endoscopy/biopsy won’t see the damage.

I don’t understand why doctors have trouble believing someone has celiac disease.  One of my doctors was considering a scan (for something unrelated to celiac) which would require a drug that accumulates in the intestine.  I asked if that would be a problem for my celiac disease.  His response: “Oh, you probably don’t have that.”  How he came up with that I don’t know.  I even look like a stereotypical celiac case (skinny).  My response: “Well the biopsy I had a month ago says I do have it.”  

[trents]

"I consulted a gastroenterologist 2 months after going gluten free, we did a test. He said I hadn't been gluten free long enough for the antibodies to disappear - but it came back negative for celiac. (I did IGA and TTG)."

Yeah, I don't know if he was correct about that.

[Isablah]

Yeah, my gastroenterologist put me in touch with a dietician to make sure that my diet was balanced without the gluten, and the dietician was like "to be honest if your blood test was negative for celiac I don't see why eating gluten should make you sick, these days people are just obsessed with losing weight"

Cool cool cool.

[Isablah]

If I eat gluten and get a skin biopsy for DH that comes back positive, do I also need to do an endoscopic biopsy to confirm celiac as well?

[Scott Adams]

Technically speaking if you are diagnosed with DH you need to be gluten-free, so further testing may not be necessary. If you don't believe the diagnosis is a correct one, you may want to ask for more tests. I would recommend blood tests, but you had them and they were negative. If you were eating gluten daily for at least six weeks leading up to that test, the results should be accurate, if not, it's possible the results were false-negative.

[Isablah]

I had been gluten free for the first time in my life for two months before I took the test.

[Scott Adams]

So if you were gluten-free for that long before taking the test, then the results won't be accurate, and will likely be false-negative.