Celiac or wheat allergy?

[beckington]

I'm waiting for my results from a blood test for celiac and a skin biopsy for dermatitis herpetiformis (celiac rash). My main new symptoms that prompted these tests were blisters/rash on my face, neck, and elbows, but this has mostly cleared up now - just a few left. It was mostly constant for about two months. The dermatologist immediately thought of dermatitis herpetiformis. I've had digestive issues for years - diagnosed with IBS about 10 years ago.

Yesterday I developed hives and what looked like little insect bites on my forearms, both of them, that went away after a couple of hours. It was shortly after I'd eaten wheat. Today I developed another rash in the same spots shortly after eating wheat twice, and then another two times I had wheat I didn't develop the rash. So not sure what that means???!

I also notice, though may be making this up in my head, that my hands sometimes get itchy after I've handled flour when baking.

All the skin issues popped up shortly after giving birth about four months ago. My little guy hasn't been gaining weight well - he's very, very small, but strong and healthy otherwise. Now that I'm suspicious of wheat or gluten for myself I'm suspicious of it for him as well.

I have a doc appointment tomorrow where I should get the blood test results, but the dermatitis herpetiformis results will be another few weeks. I'm thinking of asking for an allergy test for wheat.

I guess my question is, are the quick skin reactions I may be having recently more likely a sign of celiac or a wheat allergy? And would either possibly cause slow weight gain in a breastfed baby?

Thanks!

[scsigrl]

Why did they do both the blood test and the skin biopsy?  If you have DH, you have Celiac.

If you have it, it is possible the baby has it but there is no way to really tell till later in life. I know my DD was blood tested at 8 months but the Dr's said that we'll  have to redo it eventually (which won't happen for a long time as she is on a GF diet to make life easier d/t her brother having Celiac.)  I would do things to promote a healthy gut (probiotics and the like) because you need to have a leaky gut to have Celiac as well as the genetics and exposure to gluten.

As for the hives and stuff, I wouldn't think it is Celiac or an allergy to wheat.  I would look at other things in common.

Good luck with it all!  

[beckington]

Originally Posted by scsigrl 

Why did they do both the blood test and the skin biopsy?  If you have DH, you have Celiac.

Because by the time I got the appointment, most of the rash had cleared up so we aren't sure we got a good sample to biopsy. So the biopsy could be negative, even if it is DH. I know you can get a lot of false negatives with the blood test though! Aarrrgh, so annoying! Now the DH seems to be coming back!

There was no other things in common with the hives, unless I consider things from many hours before, but it really seemed to be reacted to the food immediately prior to the hives - of course that could be my imagination! I feel like I am seeing things at this point!

:(

[scsigrl]

How long had you had the rash?  My understanding of DH is that it is a chronic thing?  Maybe the rash is something different and the hives are a reaction to wheat?  

I hate how there are so many gray areas with allergies!  :(  Hang in there!

[beckington]

Well, I'm just back from my GP and my blood test was positive for celiac. She said a false positive is unlikely, given that the test is pretty accurate, I've had "IBS" for years, and a rash the derm immediately thought was DH. My test result was over 100 and over 12 was positive, I think it was - sorry don't have all the details, crying baby was with me! She also thinks my son's slow weight gain is related and so neither of us want to wait months for a scope - I'm going off gluten now and hopefully it will help him.

I feel a little like someone just sucker punched me. I really, really like wheat. :(

[Sandrine]

Good luck!!! There is many different alternative that taste good and may replace the gluten food items.

[scsigrl]

I am surprised your Dr. would say that.  Was it a GI or a GP?

I just want to say that if you want a 100% dx (aside from the biopsy of what you think is DH) I would NOT stop wheat yet.  I know or me, it would be 10000x's harder to go off it and then have to go back on if you decide you DO want a biopsy.  Also, keep in mind if you ever want to deduct $ from your taxes for GF food or use a flex spending account, you will need an official dx.  I am not trying to sway you but just point out things that you may not have thought of after the shock!

Yes, the ttG test should be under 12 (DS's was 212!).  But we chose to still do the biopsy because his diet is already so limited that I didn't want to pull anything out of his diet I didn't HAVE to!  (We are dealing with Top 8 allergies and some others plus FPIES).  In the end the biopsy was inconclusive but after talking to the top Celiac guy in the US, we took gluten out and his levels are dropping towards normal.

If you don't have any other restrictions, GF isn't that tough!  There are tons and tons of new GF foods out there!  If you need any quick ideas, let me know!  I know it is a big adjustment! 

[CrunchyChristianMama]

I would go off gluten.  You've got your result.  Every day that you consume gluten you are doing serious damage to your body and with all your symptoms combined with the test results, there's no real reason to need a biopsy. 

And really, your whole house should be gluten-free to avoid cross-contamination.  It's sad, and hard, but doable. 

Here's a great article to get you started.  Her site has some super yummy recipes too.

[scsigrl]

Elizabeth, As I said, I am not saying she should do one or the other, just pointing out some reasons people would want to hold off and do the biopsy.  Also, I would think (and our Dr. agreed) that it's better to biopsy and go GF after because if you go GF first and decide to biopsy later, you may not get accurate results.  It is easier for your body to heal once and not have to do so repeatedly.

Also, there isn't any reason why you have to have the entire house GF unless you are all eating that way.  Many people (our family included) have successfully managed.  It really isn't that hard.

[beckington]

No, no, it's fine to point things out, thanks! :) But I'm happy with my decision because of my son - he's really, really not gaining well and getting the scope done would take months which is not in his best interest. His weight gain issues may not be because of gluten, but I need to try. From what I understand I just need a doctor to confirm I have celiac for the tax write-off (Canada) and the doctor is making that diagnosis. I mean if I had a positive DH test (and I might) then I wouldn't bother with a scope either because that's as positive as you can get also. Regardless of the tax implications, I'm going off gluten now. Hopefully it will help my son. The rash does sound like classic DH, though I have no idea about the hives! Hopefully they are some random thing that will go away and not an indication of something else! I'm also vegan so it will be an adjustment, that's for sure!

Oh and thanks for the link Elizabeth - off to read it now! :)

[CrunchyChristianMama]

I'm sorry if I came across harsh scsigrl, that wasn't my intention. 

We tried having our house not completely gluten-free and it just didn't work.  We were super careful, used all separate cooking utensils and washed out hands like mad.  She was still reacting.  It wasn't until we got it completely out of the house and replaced most the cookware and utensils in our kitchen that we were able to get the reactions to stop.  So it's hard for me when people say they can just keep things separate, because I wonder if it's really possible.  Maybe they just don't have as blatant outward reactions and therefore think that there isn't cross-contamination?  I'm not sure.  I just know that it was a lost cause for us. 

[scsigrl]

No no, I just wanted to be sure *I* wasn't coming across as trying to tell her what to do!  That's all.

As for pulling gluten from the house, I know it is a personal decision for each family to make.  We have chosen not to remove it entirely BUT....  We also have extensive knowledge and practice with keeping foods away from other foods.  Our DS has an extensive list of food allergies (10+ and something called FPIES) so we were well versed in how to avoid x-con.  We have been living with it for so long that adding gluten to the list was difficult but totally manageable.  

I know different people are comfortable with different levels of things!  I have heard of homes with peanut allergic kids allowing peanuts in the house.  I would not be comfortable with that myself but as my motto goes...NML ;)  Not my life :)  Each person/family needs to do what is best for them in ALL things!  I just wanted to say that it is totally possible to have a combined house. (I will admit though that I feel a kinship to those who keep kosher!  We have 2 sets of many kitchen things!)

[kjbrown92]

We also kept it in the house but have separate utensils, cutting boards, etc. And we haven't had cross contamination issues. But it's definitely a personal decision as to how well you can keep things apart. We had too many foods to keep them all out of the house, especially when the two younger ones had different foods they could have. We have things labeled with Sharpies, etched into spoons, etc.

[beckington]

Well, just got the results of my dermatitis herpetiformis test back and it was positive, so that with the positive blood test seems pretty conclusive to me! Boo hiss! :(

[scsigrl]

It's tough but think of how much better you will be feeling in a bit!  Again, We've been doing it for a while now and if you need any ideas, there are plenty of people here who can help!
 

[beckington]

Thanks! I've reading things online like crazy, have books coming from the library, been in touch with my local celiac support group... but I'm sure I'll be here posting questions too! :) In another thread though, once I know what those questions are!

Thanks for all your support!