No Difference, Not Better, Gluten Free For Almost 2 Years

[hiveman]

Ok... here it is. I was diagnosed with celiac disease in February 2006. I have been strictly gluten-free ever since. I have had follow-up blood tests that show the antibodies have been gone since going gluten free. My doctors tell me I am doing a good job with the gluten free diet. Here's the thing: I feel NO DIFFERENT!!! My issue wasn't anything to do with celiac. If you search on my topics you'll see that I've been suffering from chronic hives and pressure urticaria along with angioedema. I've seen 15 doctors and gone to acupuncturists and herbalists too just to try everything. Prednisone is the doctor's medicine of choice but I try to avoid it at all costs. I never had ANY celiac symptoms prior to finding out that I had celiac disease. They discovered it through blood tests and then upper endoscopy. The doctors say it was probably an incidental finding unrelated to the hives. I've even spoken/emailed a Dr. Kelly at Beth Israel in Boston. Everyone says I need to be gluten-free.

The question... anyone else out there that has never had any celiac problems and feels no better after a long period of being gluten-free?

OK, OK... I'm going to hear the whole range of answers but I'm hoping for something new. I'm not soy intolerant, I'm not dairy intolerant, I'm not vegetable intolerant, I'm not nut sensitive, I am allergic to ibuprofin and aspirin. I've been checked for everything I've listed. I just find it completely ridiculous to be gluten free if it doesn't make any difference in my well being.

I am still gluten-free and afraid of jumping off the gluten-free wagon but then again... what's the use if it doesn't change anything?

I guess I'm not looking for answers as much as griping about it. Anyone else out there living with severe, debilitating angioedema and hives for 3 years? (the hives were on board for a year and 3 months before finding celiac... it's like going to the garage for a tire change and finding out you have a bad timing belt).

Any thoughts are appreciated. Thanks.

[Rachel--24]

I do know another member who has this problem with the severe angioedema....I'm not sure about the hives but she may have that as well. I'll let her know about your thread.

This is obviously a seperate issue that you're dealing with but it doesnt cancel out your celiac diagnosis. You still need to remain gluten-free to prevent furthur damage from that. You wouldnt want to complicate things even more by stressing your immune system with gluten in your diet.

The gluten free diet may not have cleared up your hives and angioedema....but it has definately helped you in other ways that you may not be aware of.

[Ursa Major]

Rachel is right, you are one of those unfortunate people who have celiac disease with all the internal damage, but without any obvious symptoms. But believe me, by staying gluten-free you will avoid dying about 20 years ahead of your time of some form of intestinal cancer, 100% guaranteed. That sounds extreme, but is true.

I did a google search on angioedema, and it says:

The following items may cause angioedema.

* Animal dander (scales of shed skin)

* Certain medications (drug allergy)

* Emotional stress

* Exposure to water, sunlight, cold or heat

* Foods (such as berries, shellfish, fish, nuts, eggs, milk, and others)

* Insect bites

* Pollen

Have you been checked for all of those?

I used to get extreme hives, sometimes covering much of my body, causing an arm (if I scratched the hives) to turn bright red and hideously swollen. I found out, through testing, that I had a combination allergy (this was before I found out about celiac disease) of fruit and grains. And since the day before the testing I had eaten pineapple chicken with rice (a grain) and had been covered in hives within hours (having no clue at the time what could have caused it), and having the same problem a couple of days before that from eating apple sauce cake, I knew that it was true.

When I stopped eating fruit with grains (that includes things like cranberry muffins, raisin cookies... any time you mix grain with any kind of fruit), I never had that same reaction again.

Now, I am not saying that you necessarily have the same combination allergy/intolerance. But it could be something like that, that is hard to figure out.

I am also allergic to Aspirin and Ibuprofen. Do you realize that you are, by definition, also intolerant to all foods high in salicylates, since Aspirin is pure salicylic acid?

Here is a website link to explain about salicylates: Open Original Shared Link

You would do well to read what she has to say, it may apply to you. Try eliminating all foods high in salicylates, it may really help you. Yes, it is a pain, but so worth it!

[gfpaperdoll]

I just love all Ursa's posts.

well the problem is that you have been trying to get the doctors to figure it out. when really you need to be asking us, like you are doing now, after 3 years.

So I will just throw a couple more things at ya... have you checked your shampoo, all personal hygiene products, your laundry soap, I totally think you should not even use the dryer softening sheets because they cause hives in my family... the furniture polish, the leather care polish in your car, all other cleaners, sprays etc, including hair spray...

air freshener - now I tell you that stuff is deadly - I cannot imagine why people pay money to mess up their lungs,

now onto foods, forget what you think you know about what you are allergic to via tests etc, the only real way to tell is to do an elimination diet - dietary trial is always the true test...

okay maybe the last thing - what are you eating? I would go completely grain free - including rice & I would also give up dairy - this is really easier than doing the elimination diet - but it might not work, & then you would have to do the strict elimination diet.

peanut butter causes hives in my family - I usually am okay with it, but it is a legume - which I am off of mostly, so I have switched to almond butter. the taste is really better than PB & is good on apples or celery...

then are you living in a house with someone that eats gluten? are you getting cross contaminated at home or at restaurants????? your pet food, bird seed ( which one forum member kept getting sick from refilling the bird feeders) are you around flour at your job? Does anyone in your house cook with wheat flour? wheat cake mixes or other mixes??? Are you hanging around a restaurant that cooks with flour? You can also get sick from just walking by the bakery in the grocery - it happened to me & to others - not all the time - but if they have been doing something with flour & it is in the air...

I hope you post & give us some more details - we are like the relentless gluten detectives!!!

[Green12]

Hiveman,

I've responded to your posts before on hives, uticaria, and angioedema.

I seem to be the only other member here with severe angioedema.

The kind of angioedema I have, and it sounds like what you have as well from all that you describe, is chronic angioedema- also what would be considered hereditary angioedema- meaning outbreaks are frequent and regular over a long period of time. This type of angioedema is completely different from an acute outbreak, it is not allergy induced and there isn't an easy answer or solution for it- most cases are idiopathic. Some types of hereditary angioedema are caused by a genetic blood disorder, a lack of CIN-1 receptor. It is a completely different and seperate condition than hives/uticaria, althought these conditions can overlap and occur together.

All the research I have done has indicated that the medical community doesn't even really know how to address it. In emergency or urgent care situations they commonly use epi-pens, strong antihistamines and prednisone but with chronic angioedema they have shown not to be very effective.

They have been treating this in Europe with androgen drugs, but the latest I heard they took them off the market after the medication caused liver tumors. They are working on some new antifibrin drugs presently.

I have not come across in my research any connection directly between celiac and chronic angioedema, your drs are probably right that the angioedema is a seperate/additional issue.

You DO have a diagnosis of celiac, through the blood work-up and endoscopy, that would be reason enough for me to continue eating gluten free.

[Nathan's mom]

Hi Hiveman,

I've read all of your post including the fact your blood levels have gone down and that you don't really want ideas - but I can't resist!! It is so much easier to "figure out" what is going on with someone else than be baffled by why my son isn't getting better behaviorally.

When you mentioned a problem with aspirin it did make me think of salicylates. They can be responsible for a multitude of symptoms. There are many sites for salicylate intolerance on the web. Some just suggest reducing those with high levels, but I do think if you try an elimination test on this one you need to keep the levels low.

It must STINK to have to give up gluten and not feel any different! I admire you for sticking to it.

Debbie