Does anyone have Celiac Disease?

[DizzyGirls]

As most of you are aware, my daughter has been miserable for a good part of this year.  We've been to one doctor after another with almost no luck.  An ER visit did prompt a trial of low dose prednisone and her PCP started her on Plaquenil as there was suspicion of Lupus (youngest daughter had been on it a couple of years ago with some success, put her back on it, too).  But, I've been reading, A LOT!  My daughter told me the other night that her ears often feel hot and they itch, too.  She also said that her hands itch sometimes, also.  One of her more common phrases that she says is I ITCH!!  I just thought it was dry skin because she's fair and it's sensitive.  She's always had this, since she was little.  But, oddly enough, in preparation for her appointment with a rheumatologist that didn't hardly give us the time of day, I ran across some lab results that I had somehow missed.  Someone had run a test for Lipase.  It was low, significantly.  I looked it up on Google, and found that one possibility (the others were way out there, types of cancers and such) was Celiac Disease.  The more I looked into this, the more I was aware that Celiac Disease encompassed all of her symptoms.  Even the hair loss! (which most of her doctors dismiss).  So, I'm reaching out to all of you.  If you wouldn't mind sharing some of your symptoms that lead you to a diagnosis and what type of doctor it was that did the diagnosing.  My daughter also has high tryptase levels and has also tested high for plasma histamine.  We are afraid to try any diets before finding a way to get tested as we may be dealing with Mast Cell issues and Celiac Disease (oh boy!).  Thanks for your help!

p.s. going to skip over and re-read Katybug's favorite paper on Mast Cells!

[Katybug]

Hi DG,

I don't have Celiac but it was suspected on more than one occasion for me. My gastroenterologist ran bloodwork as well as took biopsies to be tested for Celiac when he did my endoscopy  (actually all 3 endoscopies that I've had.) But, both my initial immunologist and a rheumatologist have enquired and would have sent me for testing had it not been done already.  Even after negative tests, the GI doc had me try going gluten free to ensure there was truly no gluten sensitivity even with the negative test results. Hope that is in some way helpful.

[DizzyGirls]

Very helpful, Katie!  I'm trying to sort through whether this is a Celiac thing, a Mast Cell thing (of which you are the foremost authority) or both.  I've been reading about the gluten free diet and also the low-histamine diet.  I'm trying to not start anything until she's had some testing done, as I don't want to alter any of the results.  BUT, going gluten free and low-histamine scares me to death!  Don't know what she'll eat!!  I never would have even thought of it if I hadn't ran on to the lab test.  But, I do remember you had commented one time about my daughter's rash on her face and you said it reminded of you of a Mast Cell rash (flushing).  Always kept that in the back of my mind in case it turned out to not be Lupus.  What bothers me is that our visit with the rheumatologists (2 of them!) didn't mention anything about this.  Just to even rule it out.  Process of elimination.  Thanks for your help!!

[Katybug]

This probably complicates things a little more, but, when it was all said and done, I had to do an elimination diet to actually figure out the food triggers. The gluten free diet didn't help me at all. It turns out that's because I'm not reactive to gluten but am very reactive to rice.  What do you replace gluten products with....largely rice products. So I felt worse when I was gluten free but it was because rice was the culprit. Many foods on the low histamine diet don't bother me but other foods do....like avocado and cilantro.

So, there were two issues for me ultimately, first ruling out Celiac which is truly autoimmune, then, ruling out other food triggers.

 

 

[momandmore]

The ear thing sounds like allergies to me, which could be related to MCAS, especially considering the tryptase and plasma histamine.

It was believed for a few years that my daughter was developing lupus, due to a bunch of vague symptoms and mildly elevated autoantibodies. She was also in plaquenil, which I think gave her hypotension and increased anxiety but it may have helped with pain. Anyway, she had to change to a new rheumatologist who was highly recommended. That doctor took her off plaquenil and told her all her issues are related to joint hypermobility/EDS.  She has weird allergies, in terms of not reacting to things she tests positive for and then getting unexplained hives.

She did have all her digestive enzymes tested and an upper gi to check for celiac.

[DizzyGirls]

So, we did a test this morning to see what would happen.  My daughter ate a big cinnamon roll for breakfast ( I know, not healthy, but darn good!).  About 20 minutes after eating, her pain got real bad.  After about 2 hours after eating, she started to itch like crazy and her vision got blurry.  Come to find out, she said her vision has been doing this along with the itching.  I didn't know that.  She took two Benadryl and things calmed down a bit and vision improved.  Not sure how the timeline fits in, but we know that it was something in the cinnamon roll that did this.  Off to do some more research....

[momandmore]

And she never had allergy testing?

My DD tested positive to eggs, wheat, and milk, and some other stuff, as a teen, and after the negative endoscopy. She had allergy testing several years before and had no positives. She avoids eggs but I think she would feel better if she cut wheat and dairy out, too. But she's an adult and makes her own choices.

A friend was sure she had celiac, went to a GI specialist who said no after blood testing. Then she went to an allergist who diagnosed an allergy through skin testing.

[momandmore]

Also, since it sounds like an allergy and it's affecting vision, you should really talk to an allergist because you wouldn't want to mess with triggering anaphylaxis. 

I'm not saying it's not celiac but my friends with celiac have different signs. They have GI pain and distress that can last for a week or two after having gluten, as well as fatigue, headaches, and neurological stuff.

[DizzyGirls]

Hi momandmore (love the user name!).  My daughter and I had just now noticed the itching in correlation to her eating.  I seriously do not know why we never noticed that before, but  my daughter also has horrible GI pain and it's just getting worse.  Stomach bloated and cramped so bad that we've had to go to the ER numerous times.  They are getting to know us there.  Her fatigue is off-the-charts, we were spearheaded into a headache clinic at the University nearest to us within a matter of weeks and their next appointment was in January because her migraines are so daily and she has inflammation of her optic nerves and blurring of her optic disks (one side worse than the other).  She also has horrible neuropathy.  Pain so bad that she hyperventilates.  Guess it's her body's way of trying to deal with it.  She'll grit her teeth and furrow her brow, can't have anything touching her.  Starts in her hands and feet, but then becomes so intense that it paralyzes her body until we get enough pain meds in to calm it down. 

I am so, so glad you wrote, because now I'm even more leaning toward the fact that it's Celiac.  I've read so much lately that I think I've gotten myself confused.  I know that Celiac is autoimmune, but does it cause the itching like I described?  She's even gone to the hospital with her throat half closed off during all this.  Because this started with strange muscle movements and dystonia, we just thought it was part of that.  But, looking back, when her throat closed off, that was probably verging on anaphylaxis.  I've been reading a blog of a woman who is an MD, a mom, and she has Celiac and MCAD.  I'm wondering if we are looking at both.  Katie had also mentioned this.  Thank you both!  You've definitely helped put the pieces together, by far better than any doctor we've seen!!

[momandmore]

I 'm very sorry I didn't know your daughter's full history. I haven't been active here because I've been doing well and also got caught up with other medical issues in my family over the last couple of years. I decided to come back when I realized, despite feeling much better than before, my heart rate is still wacky, and things have settled down here thankfully.

It's very possible your daughter could have celiac and MCAS and other allergic reactions going on. The gold standard for celiac is a biopsy, but since she has all those other things going on maybe you can start with the celiac blood panel with either your primary or a go specialist. I only say that because my daughter got hives a couple of days after her endoscopy that took weeks to go away and I've wondered if that triggered anything.

You really need someone who knows what they are doing to read a celiac panel. There's one part of it (I think it's the IGA. It's been awhile.) that tells if you have enough of the right immune factor for the other tests in the panel to be reliable. With my daughter's, it was low. But because the pediatrician didn't know the significance of that test, we were told no celiac. That happened maybe three times over the years. They kept repeating it because what she had looked so much like celiac. Finally, we ended up getting the endoscopy and that proved it wasn't celiac. 

If  your daughter has one possible autoimmune problem all ready, that makes another like celiac more likely. 

But please see an allergist and ask if it would be  appropriate for her to have an epi pen if you haven't already.

I hate to ask, but, since you mentioned the optic nerve, has she been tested for Lyme? I don't know why I see a relationship and that wouldn't really explain what your daughter is going through now.