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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Unbearable Hives
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Hello everyone. I am new to celiac and have only been on the gluten free diet for about a week. After about one or two days of being gluten free, my hives have gotten probably about ten times worse than they have been over the last year. Before learning about celiac I had an allergy test that showed me to be allergic to wheat but was later told to ignore that. I was told that it had nothing to do with my hives that I have had daily for more than a year. At that time, I stopped wheat for about a week and had the same reaction as I am having now that I have stopped gluten entirely. Is it normal to get worse before you start to get better? I am so miserable with these head to toe hives. I am itching so bad that I scratch myself until I bleed and still don't feel relief! If it is normal to get worse, how long does it usually take to subside??

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If these are true hives and antihistamine might help. If it is actually DH, the skin form of celiac, it may take some time to resolve. Folks with DH often will heal faster if they also drop iodized salt from their diet. If it is DH you may have to be very strict with the diet for a bit to avoid all chance of CC as even a small amount will keep the antibodies active. Go with whole foods as much as possible and avoid restaurants for a while if you are not already. Also check your skin care products for wheat or oat ingredients especially since you had a positive allergy test for wheat.

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It sounds to me like your 'hives' are actually dermatitis herpetiformis, which is a skin condition caused by Celiac. The fact that it resurges when you eat gluten free argues for this. I would spend some time on the DH section of the forum looking for advice and coping methods. I get this rash as well, and have never found anything that helps with the itch.

Perhaps a remedy for a different kind of skin affliction may help?

I am currently suffering from a wicked case of poison sumac on the soft area under my chin and my neck. Fun! So far, the most effective remedy has been this: Dollop of blue Dawn dish soap all over rash, then rub in sea salt. Yes, sea salt. Yes, it hurts. It hurts like a mofo. Let that get dry and crusty (you WILL be suffering, fair warning) then rinse off. Then, I generously swab the rash with this blue-colored toner I got from Clean&Clear for sensitive skin. It has salicylic acid, which has the same derivation as aspirin. For some reason, this program has been able to give me up to four hours of itch relief. Better than anything else I ever tried on poison plant rashes. Also helps to be taking Advil, but I don't think that applies in your situation. I sincerely hope never to be stricken with the DH rash again, but if I am, I will give this a shot!

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Its also possible you could be having other food sensitivities in addition to the gluten. I have gotten hives from salicylates, amines and tannins. Its worth looking into if you get no relief. Looking into the DH is also worth the trouble. Check out the salicylate sensitivity forum for more advice if DH is not enough of the answer.

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Hello everyone. I am new to celiac and have only been on the gluten free diet for about a week. After about one or two days of being gluten free, my hives have gotten probably about ten times worse than they have been over the last year. Before learning about celiac I had an allergy test that showed me to be allergic to wheat but was later told to ignore that. I was told that it had nothing to do with my hives that I have had daily for more than a year. At that time, I stopped wheat for about a week and had the same reaction as I am having now that I have stopped gluten entirely. Is it normal to get worse before you start to get better? I am so miserable with these head to toe hives. I am itching so bad that I scratch myself until I bleed and still don't feel relief! If it is normal to get worse, how long does it usually take to subside??

Sounds like you need to see your Dermatologist, have a skin biopsy and a blood lab to see if you can take Dapsone.. Dapsone helped my itch...

Good Luck,

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Thanks everyone for the advice! I am fairly certain that this particular problem is not DH. I have had issues with that on my elbows and hands but the rest of this has got to be hives. I get them all over and they can seem to go away completely and never leave a mark other than the marks I leave from scratching like a maniac! Yesterday, it got so bad that I went to Med Express prompt care and they gave me a steroid shot. I had the best evening and nights sleep that I can remember for a while. My skin was so clear. I actually had relief! Then I wake up this morning with my arms, legs, feet, stomach, chest and part of my back simply covered in hives and itching out of my mind again. I can't seem to get decent medical care where I live and I am at my wits end! I don't know where to go from here. I will try the dermatologist again and see where that gets me and definitely look into salicylates. I think that it is strange that the only thing that I have changed is removing gluten from my diet and then this gets drastically worse. I could live with it before because it wasnt so bad or frequent as it is now. I managed for more than a year of it. This is so much more extreme and the fact that it happens after removing something from my diet is just baffling! Thanks again for the help! I appreciate having support!! :rolleyes:

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It may be that removing the gluten from your diet has allowed your immune system to focus on overreacting to something else, which is why the steroid shot helped. Steroids would not help with DH rash, but with a histamine-based reaction like hives they do. Since you've removed the gluten, now your immune system has more resources to concentrate on your hive reaction. Yay! Perhaps some investigation into the cause of the hives is in order? Mold in the house, other foods you're allergic to, animals in the house, a plant that's in your house giving off pollen.

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Steroids would not help with DH rash,

This doesn't apply for everyone. Steroids were the only thing that helped my DH. Doctors would only let me take them once a year though and within a couple weeks of stopping them the rash was back.

OP what kind of detergent do you use? If you are not already doing so you may want to go with something that is free of dyes and perfumes.

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This doesn't apply for everyone. Steroids were the only thing that helped my DH. Doctors would only let me take them once a year though and within a couple weeks of stopping them the rash was back.

OP what kind of detergent do you use? If you are not already doing so you may want to go with something that is free of dyes and perfumes.

Really? Perhaps it's not a widely used treatment because of the side effects of long term steroid usage, hence noone talking about using it, as most docs don't treat that way? Good to know! On the rare occasion I get glutened my rash is nowhere near severe enough for me to consider using steroids to treat, but other people may want to consider it. (The poison sumac on my chin & neck at present, on the other hand...!)

In that case, OP, it sounds even more like what you're suffering should start to get better and recede the longer you're on the gluten-free diet. When I got the rash once all over my belly and thighs, it helped to be wearing spandex pants. Don't ask me why! Maybe because there's no clothing movement against the rash.

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Really? Perhaps it's not a widely used treatment because of the side effects of long term steroid usage, hence noone talking about using it, as most docs don't treat that way? Good to know! On the rare occasion I get glutened my rash is nowhere near severe enough for me to consider using steroids to treat, but other people may want to consider it. (The poison sumac on my chin & neck at present, on the other hand...!)

The side effects were why they would only give it to me once a year. In addition back then (almost 50 years ago :ph34r: ) my DH was diagnosed as 'poison ivy in my bloodstream'. I did get poison ivy once on top of the DH and boy was that pure misery.

One of your previous posts reminded me of the way my Grandmother treated my Mom's DH which was also thought to be poison ivy. She would scrub my Mom down with a stiff bristled brush and then pour salt all over the lesions. A very, very painful experience from what I was told. My Mom used to threaten me with that treatment if she thought I was complaining to much about the itch.

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The side effects were why they would only give it to me once a year. In addition back then (almost 50 years ago :ph34r: ) my DH was diagnosed as 'poison ivy in my bloodstream'. I did get poison ivy once on top of the DH and boy was that pure misery.

One of your previous posts reminded me of the way my Grandmother treated my Mom's DH which was also thought to be poison ivy. She would scrub my Mom down with a stiff bristled brush and then pour salt all over the lesions. A very, very painful experience from what I was told. My Mom used to threaten me with that treatment if she thought I was complaining to much about the itch.

Dude! It works on allergy-related rashes! Not DH! Dude!

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This doesn't apply for everyone. Steroids were the only thing that helped my DH. Doctors would only let me take them once a year though and within a couple weeks of stopping them the rash was back.

OP what kind of detergent do you use? If you are not already doing so you may want to go with something that is free of dyes and perfumes.

Thanks for your response! I am currently using All free so I am sure that is not the issue. I have had the hives for more than a year now so I have gone through eliminating so many of those types of things. Detergent, body wash, lotions, etc. I cant think of anything like that I have not tried so far. It is baffling!

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It may be that removing the gluten from your diet has allowed your immune system to focus on overreacting to something else, which is why the steroid shot helped. Steroids would not help with DH rash, but with a histamine-based reaction like hives they do. Since you've removed the gluten, now your immune system has more resources to concentrate on your hive reaction. Yay! Perhaps some investigation into the cause of the hives is in order? Mold in the house, other foods you're allergic to, animals in the house, a plant that's in your house giving off pollen.

That has also been my theory. That removing the gluten has triggered this and my immune system is kicking in. The doctor is stunned that the shot wore off so fast. He said i should have had several days of relief instead of only 12 hours. I have taken oral steroids and anti-histamines off and on over the last year and haven't had any luck. The steroid shot I got yesterday was the only thing that has worked for me and that was very short lived. I talked to the doc again a few minutes ago and he wants me to go to the ER but I really don't see the point! I have been seen by so many different types of docs and no one seems to be able to figure this out or have any idea what to do. I have had extensive allergy testing and have such ridiculous amounts of allergies that are showing up that the allergists and my doctor don't even believe the tests. They feel like it must be something internal that is causing this, but like I said before, I just can't find any good quality care in my area. Even in trying to diagnose the celiac, the surgeon who was performing the endoscopy said that he doesn't believe in celiac and thinks that carbohydrates are the problem, not gluten!! What an idiot! He also biopsied my stomach and not the samll intestines. I don't know what to do anymore. Sorry to keep rambling on and whinning so much. I am just at the end of my rope here! :(

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HI,

You don't have to get a formal diagnosis to go gluten-free. It's important to keep eating gluten until your testing is done, but after that you can start the gluten-free diet. Unless you are going to go to a different GI and get another endosocopy it might be better to start the diet. If you have DH (dermatits herpetiformis, skin version of celiac), you may need to avoid iodine for a while until the skin clears up.

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This only comes to mind because I suffer from aquagenic priruitus, which is a condition that results in extreme itching caused by contact with water, but is it possible you are actually allergic to water. No, I'm not kidding, it is an actual condition in which physical contact with water causes... you guessed it, hives. Aquagenic urticaria is extremely rare, so it is unlikely but considering it is your whole body I wouldn't rule it out. I also use the same laundry detergent to prevent like a bazillion reactions to who knows what. (I haven't determined if it's fragrances or dyes and have no desire to go around testing it.)

For totally unrelated reasons (migrating pain) I find myself sometimes with literally no end in sight and no options for relief. My doctor has approved steroid use up to 4 times a year for me. I'm not sure if this is safe or not due to side effects, although some aren't as bad as they could be for me. (Not worried about reproductive side effects.) Sometimes when you're in enough pain or distress the side effects start to matter less, and if the itching is that bad you have to decide for yourself if it's time to say bring on the steroids and screw the consequences.

Oh, and on a final note I totally get itching bringing you to the end of your rope. My heart goes out to you. (My local Wal-Greens sells backscratchers. Just FYI. Wooden ones for a few bucks but some super scratchy awesome metal ones for a little more that are amazing! Could be worth checking out if you aren't super flexible.)

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If what you are dealing with is indeed DH, it will not clear up until all traces of gluten have been eliminated and it can take quite some time for the healing to take place. Mine took more than a year of trying to be strictly gluten free. But it worked. As other's have said, you may also have to limit iodine. If you wish to do that you can go to Thyca.com to see what the low iodine foods are. It is supposed to be temporary and you should be able to go back to having iodine in your diet once your rash has healed.

Are you taking any NSAIDS? DH can be made worse for some people by taking NSAIDS and some are sensitive to salicylates. You might talk to your Dr. or allergist about it, or if you want to limit sals yourself you can go to http://salicylatesensitivity.com/ Maybe it's time to eliminate gluten entirely, then limit iodine, then consider if salicylates might be causing your hives.

Something like 1 in 100 are sensitive to salicylates, so it is possible to have Celiac and be sensitive to salicylates. I am both and I have DH. I guess that explains why Ibuprofen made my DH worse when I was taking it for the pain and inflammation of DH. Incidentally, I had hive-like linear welts in addition to the blisters of DH. Prednisone helped me at times, but nothing healed it until I went all the way gluten free. Those with DH are extremely sensitive to traces of gluten. Reactions can last weeks as far as the rash is concerned. Be aware that DH can present many ways and may resemble hives. It may be helpful to look at the DH photo bank and read the DH thread.

I now tolerate both iodine and salicylates in foods and I am free of DH.

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My oldest son had hives all over his body back in Feb.(not gluten related he has environmental allergies he does immunotherpy for). They lasted for 1.5 weeks. The itching became so unbearable I took him to our ED and they gave him steriods and epi IV. He was sent home with oral steriods to take over the next several days. Within an hour of the epi wearing off he was covered up again and he sarcastically said that the trip to the ED and the side effects from the epi were not worth it. I ended up taking him to the allergist two days later. Allergist had him taking 2 zyrtec 12 hrs apart, put him on a higher steroid for five days that tapered down, and gave him a steriod cream to put on the hives. He finaly got rid of them and hasn't had a flare up since. Also I have seen where H2 blockers like zantac can be used to treat chronic hives. Not sure the dosage though.

If anything this might give you some thoughts and ideas to run by your doctor. I hope you get some relief soon.

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Thanks again everyone for all of the advice and suggestions! I appreciate it all! I ended up in the ER because the hives got so bad I couldnt stand it anymore and the meds weren't working. I started having more and more trouble breathing and still sat for 5 hours waiting to be seen in the ER. They didn't know what to do for me except give me a shot of depomedrol, and anti-histamine shot and some zantac pills. They said that it would last me at least 5 days. Well guess what, 24 hours is about all I got. They ER doc and the RN both said I need to leave this state and go somewhere else for help. They suggested Johns Hopkins, Cleveland Clinic, Duke University, etc. Not sure what I am going to do next. Had more blood work done and another appt with the allergist next week but I don't even see the point in going anymore!

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I have found it helpful to take epsom salt baths and to detox using bentonite clay sprinkled on top of water in a mug and let sit 4 to 7 hours or more (covered to avoid flies and cats!), and then stirred and drunk with another mug of water with an equal amount of psyllium husks quickly stirred in. I started with a teaspoon of each and now am easily able to take a tablespoon of each. I have it most days though I invariably miss a few--which I think is just fine by now. Its best taken on an empty stomach, at least 2 hours after eating and an hour before eating anything more. Its important to drink extra water during the day. The bentonite/psyllium combo absorbs all kinds of chemicals, radiation, toxins, bacteria and helps them safely leave your body. Thing is is that it does help reduce my itchy hives and eczema and my myoclonus often precipitated by itchy bouts due to hives.

Walking every day for an hour also helps, and eating lots of (for me low salicylate and low tannin) veggies. Hatha yoga also helps. Its been proven to positively change one's biochemistry. Being on a vegetarian diet also seems to help. So I eat lots of beans and brown rice. The beans though for me have to be white to avoid tannins. And of course well soaked and cooked.

Also its important to look at what fats you are taking. Omega 3 fish oil can really help reduce one's inflammatory response. I get the Twinlabs plain fish oil, put it in a widemouth jar and freeze it to avoid amine formation.

I use spring water rather than regular filtered water due to the coconut husks used to make the carbon filters. I don't know if you have a problem with coconut, but what they hey, if you do have salicylate sensitivity it could be a problem.

If you do have a salicylate problem it means you are sensitive to some phenols. So using things like phenol assist by kirkman labs can help. And the product Histame can help with a great variety of amines...including histamines. Tannins can be yet another problem as can oxalates.

What I am implying here is further investigation into your diet is likely needed. There are solutions once you figure out what the problem is. No matter what, IMHO you may well have a problem with an overtaxed liver due to likely leaky gut from the gluten problem. This in turn makes your body become sensitized to a whole host of foods. Then of course your liver gets overtaxed from the detritus. And then next on the list is your skin and lymphatic systems...

IMHO taking steroids is no way to give your liver and skin a chance. Its likely your body wants you to discover what is actually bothering it, rather than coverup of symptoms with drugs. At most it is a dangerous stopgap though very understandable you would want to try it, it comes at a cost. Plus in your case it just is not working.

IMHO look to the Royal Prince Alpert Hospital in Australia to give you a few clues as to what is going on and how to figure it out with their Failsafe Diet.

Meanwhile though while you still do have some symptoms of DH do get it checked out rather than get another invasive procedure into your intestines. It is a very effective and less costly and often more accurate way to get a diagnosis of celiac since its right there obvious where to take the biopsy on the skin--right next to the little clear pustule filled areas. DH and celiac go hand in hand.

No matter what, whether its DH or not, this gluten sensitivity (or celiac) could be precipitating or at least making the other itchy symptoms far worse than they otherwise would be.

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We got some relief for our DD using a combination of antihistamines. Ultimately, we found she had a chronic infection of H. Pylori that we treated. Treating her H. Pylori infection seemed to help her condition, and I have since found references to H. Pylori and chronic urticaria. Our DD also has a complicated and severe gluten allergy, but the hiving issues have subsided substantially since we treated the H. Pylori, in conjunction with recognising the severity of her gluten allergy. I hope you find relief soon.

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We got some relief for our DD using a combination of antihistamines. Ultimately, we found she had a chronic infection of H. Pylori that we treated. Treating her H. Pylori infection seemed to help her condition, and I have since found references to H. Pylori and chronic urticaria. Our DD also has a complicated and severe gluten allergy, but the hiving issues have subsided substantially since we treated the H. Pylori, in conjunction with recognising the severity of her gluten allergy. I hope you find relief soon.

Hi-ya WLgators,

I hadn't heard that about H.Pylori and skin rashes. Do you happen to have any references for it? I think that's a very interesting connection, I take mastic gum for H.pylori. It is cheap and not an prescribed anti-biotic so I like that. It is a natural cure. It take it 3 times a day if I have problems. I seem to have a propensity for getting stomach ulcers as this is the 3rd time in 4 years for me. They always start on the left side of my stomach as I sleep on the right side a lot. So right now I am taking mastic gum and Betaine HCL with meals and before going to bed. It has already knocked the pain way back after just a few days. I'll keep taking it for a couple weeks. But I think I will continue to take it maybe once a week from now on, as a preventative, plus the Betaine HCL. H. Pylori likes low stomach acid, which I am starting to think I have. Sleeping on my left side eases the pain also. Stomach acid needs to coat the affected area to kill the H. Pylori, IMHO of course

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