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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?  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
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tomcallahan

How Soon After Eating Gluten Do You Have Breakouts?

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I've searched the posts on this forum, but I can't seem to find a good answer to this question. I was diagnosed with DH four years ago, and started on a high dapsone dosage together with the gluten-free diet. I stepped my dapsone dose down over time and haven't taken any for about five months.

I believe I'm pretty good about the gluten-free diet, but sometimes I slip up and get a small breakout. I'm interested in knowing how soon after eating gluten do other DH-folks see breakouts? This will help me pinpoint what I ate that caused the breakout. My sense is that if I eat something with gluten during the day, I'll notice either during that night or the following morning. Do other people have the same experience?

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When I was new to gluten free I would get a breakout within hours of ingestion. I found after a few years stictly gluten-free, in other words, once the antibodies left my skin, it takes a lot of gluten for me to breakout and even then it is very minor. I was very strict from the being and I stopped getting new lesions really quickly. My old lesions also healed much quicker than they did before gluten free. I never took Dapsone. My system was too damaged by other celiac effects to risk it.

You need to be more cautious about your 'slipups'. Until you are the antibodies are going to keep being reactivated. I also avoid gluten in all topicals and of course you need to avoid Iodized salt until your lesion free for a while. After a time without a breakout you could try adding the Iodized salt back in, some can.

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When I was first Gluten Free the breakouts took about 3 days. I was pretty imperfect at being gluten free though - not on purpose, but by accident and lack of knowledge. After I did my studying of foods and labels and learned a lot, I became obsessive about being gluten free and didn't chance it EVER (except to trust a chef in a restaurant to clean the grill before cooking for me, and then I've had some "accidents" - but now that it's been several years it takes a much varied amount of time to break out and therefore I never ever know what it really was. I also now get digestive symptoms FIRST and if it was a bad glutening, SERIOUS symptoms and quickly (like hours).

I have never been completely rash free since it takes so long to heal - and when it's healing it itches (dry skin and healing itch, not DH itch) and so I scratch and that makes it take yet longer.

I've given up trying to know what caused the breakouts. But I can usually tell what caused the stomach/big D (Like IHOP scrambled eggs! They have pancake batter mixed in them instead of milk to make them fluffy.....I was SO upset about that one).

You have to be absolutely neurotic about eating gluten free or DH will never go away.

I do not avoid topicals (creams lotions shampoo etc), I don't react to them, and have found that the ones I use don't generally have wheat anyway. I stayed away from iodized salt for about the first 6 months and then went back to regular salt.

I took Dapsone for a short time - it helped, but the side effects nearly killed me (literally). It's a WICKED drug and terrible for you - it was developed in the 40s for leprocy - and those people really needed something strong. When there is a drug alternative availalbe - called "EATING RIGHT" - I could not see risking my health permanently to take a drug instead!

Good luck....learn the labels and ingredients. After your system has calmed itself somewhat you will be better able to gauge the times and causes of symptoms.

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I've searched the posts on this forum, but I can't seem to find a good answer to this question. I was diagnosed with DH four years ago, and started on a high dapsone dosage together with the gluten-free diet. I stepped my dapsone dose down over time and haven't taken any for about five months.

I believe I'm pretty good about the gluten-free diet, but sometimes I slip up and get a small breakout. I'm interested in knowing how soon after eating gluten do other DH-folks see breakouts? This will help me pinpoint what I ate that caused the breakout. My sense is that if I eat something with gluten during the day, I'll notice either during that night or the following morning. Do other people have the same experience?

I am curious, how do your breakouts appear after being glutened? My daughter (age 7) who we still don't know if she has DH or not, but after going gluten free her skin issues have resolved themselves. However, she still has some marks on her inner thighs that have never gone away (purplish spots where the leisons used to be). We have found that they are getting irritated again, maybe "acting up" and not necessarily new leisons.

Thanks!

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I was finally correctly diagnosed with DH after 1 1/2 years of being misdiagnosed and miserable. I’m currently eating gluten-free (only 2 weeks) and am taking 50 mg a day of Dapsone. My body is responding incredibly and each day the blisters & rash is better. I think I slipped up yesterday and ‘Glutened’ myself with a German Sausage or a piece of Salami. Within about 4 hours I felt the DH itch & burn that I’d only had a few days of relief from... I had a new blister form on my finger this morning and several on my buttocks (my worst site).  It’s now 24+ hours later and I am just now starting to feel better. The new Blisters never exploded like before, and are actually already fading. The severe itch & burn stopped after about 12 hours. Being so new to Celiac Disease DH, this is a wonderful forum for information with other people who know exactly what DH patients go through. I hope to contribute more information in the near future but for now, I am very grateful for the information received from you all. : ) Barbie 

 

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On 11/12/2017 at 12:10 AM, Barbie Wickham said:

I was finally correctly diagnosed with DH after 1 1/2 years of being misdiagnosed and miserable. I’m currently eating gluten-free (only 2 weeks) and am taking 50 mg a day of Dapsone. My body is responding incredibly and each day the blisters & rash is better. I think I slipped up yesterday and ‘Glutened’ myself with a German Sausage or a piece of Salami. Within about 4 hours I felt the DH itch & burn that I’d only had a few days of relief from... I had a new blister form on my finger this morning and several on my buttocks (my worst site).  It’s now 24+ hours later and I am just now starting to feel better. The new Blisters never exploded like before, and are actually already fading. The severe itch & burn stopped after about 12 hours. Being so new to Celiac Disease DH, this is a wonderful forum for information with other people who know exactly what DH patients go through. I hope to contribute more information in the near future but for now, I am very grateful for the information received from you all. : ) Barbie 

 

When I was first diagnosed my DH would flare within hours of consumption. Now after being gluten free for many years those blisters are the last thing to show up in my glutened cascade of symptoms. I also now only get a couple small blisters and they heal fairly quickly. I was virtually covered in lesions when I was diagnosed.  Do make sure that your doctor is doing frequent liver panels while you are on Dapsone. It is quite a toxic med. I personally chose not to take it and the diet and avoiding obvious sources of iodine cleared me up quite quickly.  Do be sure to read the Newbie 101 thread at the top of the Coping section as it will have a lot of good info to keep you safe and healed as quicly as possible.

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Ravenwoodglass,  Thank you for your reply, it’s nice to not feel so alone with this health issue. This is a great forum. I’m not fully aware of the iodine ingestion, should I avoid iodized salt & fish? I no longer have my thyroid gland, I had hyperthyroidism at 21 (I’m 59 now) & had it surgically removed, then became hypothyroid with Graves Disease a year later (seems to correlate somehow with Celiac?) & have taken Synthroid for 37 years. Lots of questions for my Dr and yes, blood tests. I’m almost healed of all DH blisters & rash and think I will discontinue the Dapsone quite soon. I’ve been treated for so many misdiagnosed diseases & already have taken way too many medications I did not need, last thing I want now is to poison myself further! Again, thank you for your response and suggestions. 

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26 minutes ago, Barbie Wickham said:

Ravenwoodglass,  Thank you for your reply, it’s nice to not feel so alone with this health issue. This is a great forum. I’m not fully aware of the iodine ingestion, should I avoid iodized salt & fish? I no longer have my thyroid gland, I had hyperthyroidism at 21 (I’m 59 now) & had it surgically removed, then became hypothyroid with Graves Disease a year later (seems to correlate somehow with Celiac?) & have taken Synthroid for 37 years. Lots of questions for my Dr and yes, blood tests. I’m almost healed of all DH blisters & rash and think I will discontinue the Dapsone quite soon. I’ve been treated for so many misdiagnosed diseases & already have taken way too many medications I did not need, last thing I want now is to poison myself further! Again, thank you for your response and suggestions. 

Just an FYI, when I first was gluten-free, even too much of a gluten-free product, like cookies, would cause the itch to come back. So be very careful to not eat too much of those certified gluten-free foods, as those 20 ppm add up! That was about 10 years ago for me, these days I don't have any itch or dh is I get CC'd or glutened. 

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Thank you so much as I am trending to eat some of the Gluten Free bread products. So being new to all of this, I keep seeing the term “cc’d” & don’t quite understand its meaning... can you translate for me? Thanks so much ! 

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37 minutes ago, Barbie Wickham said:

Ravenwoodglass,  Thank you for your reply, it’s nice to not feel so alone with this health issue. This is a great forum. I’m not fully aware of the iodine ingestion, should I avoid iodized salt & fish? I no longer have my thyroid gland, I had hyperthyroidism at 21 (I’m 59 now) & had it surgically removed, then became hypothyroid with Graves Disease a year later (seems to correlate somehow with Celiac?) & have taken Synthroid for 37 years. Lots of questions for my Dr and yes, blood tests. I’m almost healed of all DH blisters & rash and think I will discontinue the Dapsone quite soon. I’ve been treated for so many misdiagnosed diseases & already have taken way too many medications I did not need, last thing I want now is to poison myself further! Again, thank you for your response and suggestions. 

I don't know much about thyroid issues. I simply avoided iodized salt and iodine in my supplements. If the thyroid issues impact your need for iodine do talk to your doctor before stopping it.  Do also talk to your doctor about stopping the dapsone. You may need to taper the dosage so the DH doesn't flare up again but I am not sure about that. I can identify with the wanting to get off of the meds. For a bit after diagnosis when I felt sorry for myself because I couldn't have phyllo type doughs anymore I would go into my closet and drag out the tackle box full of all the meds I didn't need to take anymore. The trade off for good health was sooo worth the adjustment to a gluten free life.  You should check your toiletries for gluten ingredients also. 

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8 minutes ago, Barbie Wickham said:

Thank you so much as I am trending to eat some of the Gluten Free bread products. So being new to all of this, I keep seeing the term “cc’d” & don’t quite understand its meaning... can you translate for me? Thanks so much ! 

CC is cross contamination. An example would be items that are gluten free by ingredients but made in a factory that has shared lines.  Using a colander for straining your gluten free pasta that was used for wheat pasta is another example as is using a toaster that has been used for wheat bread (you need one that is new and will never be used for gluten bread). Also cutting boards and wooden utensils or scratched pans will also CC you.  I didn't have to avoid stuff like processed gluten free breads or pastries etc but some folks need to do so. Start with shopping the outside of the store and go for mostly unprocessed foods in the begining. That will lessen the chance for CC and speed healing. Be sure to read the Newbie 101 thread at the top of the Coping section it will have a lot of valuable info for you. You may also want to start a new thread in the post diagnosis section to ask about your thyroid meds to be sure they are gluten free. Make sure your pharmacist knows you are celiac so they will check all scripts for safety. If you live in an area that has a Wegmans store do your shopping there. The family that owns them has celiacs in the family. I have never been CC'd by any of their items marked with a circle G.

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Thank you very much, so much to learn -but thanks to people like you and this forum I am trying to quickly learn & understand! I was aware of cross contamination but didn’t put the ‘CC’ reference together with it! I was stuck on my old receptionist days of letter typing & CC’ing people. 🙃. So thank you 😊 for clearing that up for me! 

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I tended to break out around 6 weeks later just enough time to forget what I may have consumed that was contaminated

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On 2/22/2009 at 6:24 AM, tomcallahan said:

I've searched the posts on this forum, but I can't seem to find a good answer to this question. I was diagnosed with DH four years ago, and started on a high dapsone dosage together with the gluten-free diet. I stepped my dapsone dose down over time and haven't taken any for about five months.

 

I believe I'm pretty good about the gluten-free diet, but sometimes I slip up and get a small breakout. I'm interested in knowing how soon after eating gluten do other DH-folks see breakouts? This will help me pinpoint what I ate that caused the breakout. My sense is that if I eat something with gluten during the day, I'll notice either during that night or the following morning. Do other people have the same experience?

I have the same experience. My DH usually starts showing by that evening. I don't make many mistakes with gluten except when I'm eating out when traveling. When I get DH, it's usually from dairy. Dairy has the same reaction but without the acid reflux that gluten gives me. Most of our family has the same reactions. I have had many iGg tests and also found to have a problem with soy, and garlic and nutmeg  someday I'm going to write a letter to my grandchildren and tell them all that I've learned  and to apologize for the genes I've bestowed on them. R 

 

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On 11/13/2017 at 5:52 PM, Barbie Wickham said:

I had hyperthyroidism at 21 (I’m 59 now) & had it surgically removed, then became hypothyroid with Graves Disease a year later (seems to correlate somehow with Celiac?) & have taken Synthroid for 37 years.

I was diagnosed with hyperthyroidism around age 11-12. I had adverse reactions to the meds available at the time (the 80s).  Radioactive iodine was used to destroy the thyroid at that time but my doctors didn't want to use it because I was pubescent. So I had my thyroid partially removed instead when I was 14-15.  Like you I've been on Synthroid for 30+ years (I'm 47).  I was diagnosed with Celiac about a month ago so I'm also interested in the thyroid correlation.  I didn't have significant digestive symptoms.  I was diagnosed as a result of low B12 and iron.

I know that Iodine is essential to thyroid function. If yours has been completely removed, iodine may be irrelevant (not sure what else iodine does).  But if you have a thyroid and especially if Hypo, iodine is necessary for thyroid function. 

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One more thing. My DH usually gets worse before it gets better. It might take a week to get better. The DH started around my trunk above my waist, but over the years it's rising up on my chest closer to my neck. I don't know what's next. Still itchy too. 

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11 minutes ago, JGF17GF said:

I was diagnosed with hyperthyroidism around age 11-12. I had adverse reactions to the meds available at the time (the 80s).  Radioactive iodine was used to destroy the thyroid at that time but my doctors didn't want to use it because I was pubescent. So I had my thyroid partially removed instead when I was 14-15.  Like you I've been on Synthroid for 30+ years (I'm 47).  I was diagnosed with Celiac about a month ago so I'm also interested in the thyroid correlation.  I didn't have significant digestive symptoms.  I was diagnosed as a result of low B12 and iron.

I know that Iodine is essential to thyroid function. If yours has been completely removed, iodine may be irrelevant (not sure what else iodine does).  But if you have a thyroid and especially if Hypo, iodine is necessary for thyroid function. 

I think that iodine can aggravate DH (celiac rash).  To help expedite healing, some people who have DH reduce iodine temporarily in their diets, along with going gluten free (for life).  

I have Hashimoto’s and have celiac disease.  Like you, I was just iron deficient, but no GI issues.  The correlation between the two is related strongly to genetics.  Type 1 diabetes is also strongly linked.  What initially triggers the autoimmune response is still unclear.  Fortunately, celiacs can improve by going gluten free unlike other autoimmune disorders.  

Welcome to the forum!  

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