Celiac Blood Tests Negative And Chronic Hives

[nicolebeth]

Hi, I've posted here before about my now (almost) 6yo who had low total IgA, and went on to have a negative endoscopy. He's still little, but it's thought that he's on his own 5th %ile curve (he hasn't dropped off his curve, fortunately).

Anyway, I have had hives since October with some mild lip angioedema as well. When the hives started, I had started eating gluten again more regularly. I should start by saying I have had previous negative blood tests for celiac, but overall a bit more energy without gluten (but I'm not sure how much that has to do with gluten and how much it has to do with a sugar spike from those types of foods).

I continued to eat gluten for a month, had new blood tests (for everything to try and track down the hives). All tests, including the celiac tests, were negative. Normal total IgA, negative Endomysial IgA Ab (titer), and the TTG Ab IgA was <1.3 with a reference range of <4.0. My doctor said this conclusively proves no celiac, and that there are no other tests to run. (I had thought there might be others--IgG--but she said that she did them all. On my blood work, these are the only tests that suggest looking for celiac.

I am hypothyroid on 100 mcg of Levoxyl (I had a post-partum hyperthyroid period around the time the hives started, so I dropped the dose to 75 mcg for a month).

I've been through the forums, and have found some people that have had hives in connection with gluten intolerances. I feel pretty willing to try anything, at this point (I've even consulted a homeopath). I'm on Claritin as a sugar pill (though, placebos are meant to work, right? Not sure that the Claritin does anything). I can't/won't take much else as I'm nursing/taking care of an baby and have to drive around two other kids and don't want to be sleepy on top of sleep-deprived.

I know that many have opted to go off of gluten without any lab confirmation. It feels weird, though, to avoid a food (forever) without any kind of "official" confirmation. Is there any other test to take (aside from an endoscopy)? (I've also been "diagnosed" with IBS; I had a lower GI and barium enema in 1994.) When I was pregnant, I had no obvious problems with gluten, more problems with nightshades (which bother me here and there still). I've been lactose intolerant of most products with lactose for a long time. I don't seem to tolerate simple sugars well. The most recent lip swelling came after "matzah baklava" (gluten + sugar, and a few pistachios) last night. I'm going into my PCP again today (just to be annoying, probably).

What I have read (on About Thyroid) is that there is a strong gluten intolerance connection to hypothyroidism. Also, I've read that the hives could be an autoimmune disorder (with or without a gluten connection).

If anyone has any thoughts about this, I'd appreciate it. I've got a week where it's super-easy to avoid gluten (Passover). And a few days where I can't take Claritin at all (waiting for an allergist appointment next Monday). If it is gluten, how soon would I be able to know this? Compared to some, there's nothing at all wrong with me. Yet, it is beyond annoying to be covered in hives, itchy most evenings, and my 9yo is grossed out (I'm a little grossed out, too).

Thank you!

[eatmeat4good]

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Interesting you should post this. I have hives too. Salicylic acid intolerance and thyroid disease can contribute to chronic hives. Elimination is the most effective tx. My hives react really bad to benzoates which are in almost all sodas and juice drinks. Food coloring activates them too. Yes, it's hard to get rid of whole food groups without diagnosis, but if the hives go away it is worth it. Had a horrible reaction to M&M's with a diet coke...within 30 min...hives all over my face and angioedema.

I have to avoid Gluten, Salicylates, Benzoates, Tartrazine, Nitrites, Sulfites which means almost all processed foods. I just made the connection myself. Dr. has me avoiding these additives and taking Zyrtec Certrazine twice a day to try to control the hives.

They used to say there was nothing that could be done about chronic hives, but now they are finding it related to food additives and preservatives. I hope it helps you or at least that you find the articles interesting.

[nicolebeth]

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Interesting you should post this. I have hives too. Salicylic acid intolerance and thyroid disease can contribute to chronic hives. Elimination is the most effective tx. My hives react really bad to benzoates which are in almost all sodas and juice drinks. Food coloring activates them too. Yes, it's hard to get rid of whole food groups without diagnosis, but if the hives go away it is worth it. Had a horrible reaction to M&M's with a diet coke...within 30 min...hives all over my face and angioedema.

I have to avoid Gluten, Salicylates, Benzoates, Tartrazine, Nitrites, Sulfites which means almost all processed foods. I just made the connection myself. Dr. has me avoiding these additives and taking Zyrtec Certrazine twice a day to try to control the hives.

They used to say there was nothing that could be done about chronic hives, but now they are finding it related to food additives and preservatives. I hope it helps you or at least that you find the articles interesting.

Very interesting! Thank you for all that information. I'm getting a new remedy from the homeopath, going on Day 2 of no gluten (my PCP was very much in favor of that, says she sees lots of cases of gluten intolerance that aren't celiac), and have an allergist appointment on Monday. (Sadly, the hives are too bad to cut out the antihistamine, so I hope the appointment isn't a waste on Monday.) Anyway, I appreciate the information about how so much of our diet can contribute to this. This is the second time it has happened to me--the first time, it went away when I was away from home. This time, I still had the hives while on vacation, and it has gone on for much longer (and is more annoying). Anyway, thanks again for your response.

[eatmeat4good]

I feel for you. I know it is miserable. I use antihistamines too. In fact one of the articles I read said Chronic hives respond best to Certazine morning and night. Though the directions say only take it once a day. I thought you might want to ask your Dr. about that in case you want to try. Zyrtec, Certrazine works better for me than Claritin. I hope you get some relief.

[nicolebeth]

Good tip about the Zyrtec. I was just told to take Claritin back in 2003 (the first time this happened), and I kind of went back to it. It's odd how they seem to be getting worse (and seem to come around 8:30pm every day, regardless of whether I've taken Claritin yet that day or not). The more I've read up on this, the more I doubt the allergist will be able to do anything as long as I'm on any kind of antihistamine. They'd probably rather I take benadryl as it would be out of my system faster. I do so enjoy the two hours or so a day that are hive-free...which I'm guessing is courtesy of the 24-hr drug. Perhaps the allergist can at least do the IgG blood draws for celiac that I didn't have before--I was eating plenty of gluten until a few days ago, so I imagine that will work.

Thanks again!

[eatmeat4good]

I just have to make another comment. Your symptoms are worse in the evening...after you have been eating gluten during the day. My DH activated in the evenings too. Horrible itching and burning and yet in the mornings I seemed to have some reprieve. If it is DH you should ask for a skin biopsy and have them take it next to the lesion on clear skin. That is where the antibodies are found. I never made the connection about the sores being activated in the evenings, but it no longer happened once I went gluten and iodine free. I sure hope you try eliminating gluten...that could be the cause of it all.

[nicolebeth]

I wondered, too, about the timing. Although, today, the symptoms are pretty bad though tolerable (no gluten, but no Claritin yesterday). I did have a biopsy of the original hive (the derm. thought it was pityriasis rosea, but it wasn't acting like that. Anyway, she biopsied two actual hives, themselves, and they were found to be...hives. I haven't seen any kind of rash that looks any different from hives. So, I wasn't thinking it could be DH, though I've heard that hives + hypothyroidism could mean gluten intolerance (or something like that).