itchy rash under breasts

[homeschool mom]

Hi, I'm new here. I developed a rash under my breasts last summer. It's very itchy but I don't get bumps or fluid like other people mention. I have been eating a gluten free diet for 6 years, knowing I was gluten sensitive, but recently was diagnosed with celiac. I have two celiac genes, and my dad, sister and cousin are celiac. I have certainly had enough stressful events in my life for celiac to present so I am not surprised by the diagnosis. My tissue transglutaminase number was 141.7. The thing is, my family still eats gluten, so I have been suffering with the cross contamination, not realizing it. I will be getting my family tested and then getting all the gluten out of the house. We will all be going gluten-free, truly, and I hope this makes a difference.  I also have autoimmune thyroid disease and have been taking three drops Lugol's iodine most days to help with that. Now, after reading on this forum, I see there is a link between high iodine and this type of rash. So how do you get around needing iodine for the thyroid when you have this rash? I'm assuming I have dermititis herpetiformis although I have not been diagnosed officially. I guess I should stop taking iodine, and do you think I should go on a low-iodine diet for a while, too? I do eat fish a couple of times a week!  Any help you can give will be appreciated. 

[cyclinglady]

Why are you taking iodine?  

I have had Hashimoto’s Thyroiditis for 20 years and never took iodine.  If you are iodine deficient, you can develop a goiter and become hypothyroid.  But you said you had autoimmune thyroiditis.  No amount of iodine is going to stop your body from attacking your thyroid in my non-medical opinion.  Usually, thyroid hormone replacement is prescribed.  Hashimoto’s can also cause nodules and an enlarged thyroid.  To determine which kind of hypothyroidism you have, ask your doctor to test you for thyroid antibodies.  

Stop the iodine.  It is RARE, really rare, for anyone in the US to have an iodine deficiency.  Keep taking it if a medical doctor has tested and prescribed it for you.  

Ask your doctor about a candidiasis rash (fungus) just because that occurs often in that area.  

As far as your rash, only punch biopsy can determine if you DH.  A dermatologist who is very DH/celiac savvy can do this. But the treatment is the same no gluten!  So I am not sure if it is worth identifying DH.  Active celiac disease can cause many rashes.  It sounds like you are on the right path.  Get gluten out of your house and your kids tested for celiac disease.    My house is gluten-free.  My non-celiac kid gets her gluten fix outside of the house.  Every few years, I load her up on gluten to insure her antibodies tests are accurate.  Because anyone can develop celiac disease at any time.  

Welcome to the forum!  

 

 

[homeschool mom]

7 minutes ago, cyclinglady said:

Why are you taking iodine?  

I have had Hashimoto’s Thyroiditis for 20 years and never took iodine.  If you are iodine deficient, you can develop a goiter and become hypothyroid.  But you said you had autoimmune thyroiditis.  No amount of iodine is going to stop your body from attacking your thyroid in my non-medical opinion.  Usually, thyroid hormone replacement is prescribed.  Hashimoto’s can also cause nodules and an enlarged thyroid.  To determine which kind of hypothyroidism you have, ask your doctor to test you for thyroid antibodies.  

Stop the iodine.  It is RARE, really rare, for anyone in the US to have an iodine deficiency.  Keep taking it if a medical doctor has tested and prescribed it for you.  

As far as your rash, only punch biopsy can determine if you DH.  A dermatologist who is very DH/celiac savvy can do this. But the treatment is the same no gluten!  So I am not sure if it is worth identifying DH.  Active celiac disease can cause many rashes.  It sounds like you are on the right path.  Get gluten out of your house and you kids tested.  My house is gluten-free.  My non-celiac kid gets her gluten fix outside of the house.  

Welcome to the forum!  

 

 

Hi cyclinglady. Thanks for your response. I read a book a few years ago about iodine and taking it seemed like a good idea at the time. I can't remember all the details. I'd have to go back and re-read it! I will stop the iodine right away.

My tests showed Thyroglobulin Ab was199 and Thyroperoxidase Ab was 17. My naturopath hesitated to give my condition a name. She wanted to focus on the celiac diagnosis first and get that dealt with. So I don't really know what it is, other than an autoimmune issue with my thyroid. 

 

 

[cyclinglady]

Of course I can not diagnose you over the Internet because I am not wearing a white coat.    However, I do have celiac disease, autoimmune thyroiditis and more recently, autoimmune Gastritis (which seems to like to hang with Hashimoto’s).  Your elevated thyroid antibodies indicate that you have autoimmune disease.  Your doctor should see how your thyroid is actually functioning and determine if you are hyper or hypo as treatment is completely different.  

If you completely avoid gluten and you are still unwell, please see a GI. 

I hope this helps.  

 

[homeschool mom]

9 minutes ago, cyclinglady said:

Of course I can not diagnose you over the Internet because I am not wearing a white coat.    However, I do have celiac disease, autoimmune thyroiditis and more recently, autoimmune Gastritis (which seems to like to hang with Hashimoto’s).  Your elevated thyroid antibodies indicate that you have autoimmune disease.  Your doctor should see how your thyroid is actually functioning and determine if you are hyper or hypo as treatment is completely different.  

If you completely avoid gluten and you are still unwell, please see a GI. 

I hope this helps.  

 

I understand. I got a thyroid panel done and it showed my levels were a bit low(so hypo) and I might benefit from some thyroid hormone. As I said, though, my naturopath wants to make sure my kids are tested and the gluten is out of the house before going to the next step. So, one step at a time, I guess. Thanks for the help.

[cyclinglady]

Any family doctor will prescribe you thyroid hormone replacement with those results.   The thyroid is an easy fix.  Why suffer?  I recall that I felt the effects within day or so.  It was amazing!  

My kid just got a lab order for a complete celiac panel (she is beefing up on gluten).  The cost without insurance is $450.  Are you paying for the tests or insurance?  My diagnosis allows for my kid to get easily tested by our insurance.  A complete panel is needed because I have never had a positive on the EMA or TTG — just the DGP.  

All celiac experts recommend intestinal biopsies to confirm a diagnosis and determine damage.  Just make sure you are researching well so that you make the right decisions given your circumstances. 

 

[homeschool mom]

18 minutes ago, cyclinglady said:

Any family doctor will prescribe you thyroid hormone replacement with those results.   The thyroid is an easy fix.  Why suffer?  I recall that I felt the effects within day or so.  It was amazing!  

My kid just got a lab order for a complete celiac panel (she is beefing up on gluten).  The cost without insurance is $450.  Are you paying for the tests or insurance?  My diagnosis allows for my kid to get easily tested by our insurance.  A complete panel is needed because I have never had a positive on the EMA or TTG — just the DGP.  

All celiac experts recommend intestinal biopsies to confirm a diagnosis and determine damage.  Just make sure you are researching well so that you make the right decisions given your circumstances. 

 

I am in Canada, and I am paying for the tests. No insurance coverage. I opted out of the biospy because I feel it is redundant considering my genetics, history, reactions, etc. I may need to for my kids, though. We'll see. They sure wouldn't like that procedure, though:( I've never liked doctors much, though. When I had my severe adrenal crash six years ago he ran the standard tests, said everything was fine, and then gave me a phycological questionnaire to fill out. I never went back.

[cyclinglady]

I get incompetent doctors!  Believe me!  With your blood and genetic tests and very strong family history, odds are you are celiac.  I was hoping that a medical doctor diagnosis would make it easier for your kids to get tested if you had insurance or access.  Just trying to save you some cash.  

My hubby is not formally diagnosed.  He went gluten free per my allergist and his GP 18 years ago (12 years before me).  The diet worked.  He refuses to do a gluten challenge in order to get a diagnosis, but we kind of like paying our bills. ? I can tell you that once our house went completely gluten free after my diagnosis (just made sense...two against one), hubby reported feeling even better.  Was I glutening him?  Maybe.  I thought I was a careful.    He took lots of risks eating out and he has stopped that (me too) because he realized that he was getting a lot of cross contamination.  

Just know that not all celiacs test positive on the TTG.  If one of your kids has some symptoms and tests negative.  Try to get the additional blood tests.  I think in Canada you have access to a bio card (why not the US?)  to test for celiac disease which is available at pharmacies.  

My kid tested negative five years ago.  She is gluten light.  We are retesting because she will be going off to university and we need to accommodate her if she has celiac disease.  She will be tested for anemia too, because that was how I was presented.  Lifelong anemia.  It was just blamed on a genetic anemia and my menstrual cycle.  Decades of problems.  I guess it is why I push for testing.  I hate to see people suffer like I did and told that it was “all in my head” — like anemia and passing out frequently etc. is in my head!  

 

 

[homeschool mom]

3 hours ago, cyclinglady said:

I get incompetent doctors!  Believe me!  With your blood and genetic tests and very strong family history, odds are you are celiac.  I was hoping that a medical doctor diagnosis would make it easier for your kids to get tested if you had insurance or access.  Just trying to save you some cash.  

My hubby is not formally diagnosed.  He went gluten free per my allergist and his GP 18 years ago (12 years before me).  The diet worked.  He refuses to do a gluten challenge in order to get a diagnosis, but we kind of like paying our bills. ? I can tell you that once our house went completely gluten free after my diagnosis (just made sense...two against one), hubby reported feeling even better.  Was I glutening him?  Maybe.  I thought I was a careful.    He took lots of risks eating out and he has stopped that (me too) because he realized that he was getting a lot of cross contamination.  

Just know that not all celiacs test positive on the TTG.  If one of your kids has some symptoms and tests negative.  Try to get the additional blood tests.  I think in Canada you have access to a bio card (why not the US?)  to test for celiac disease which is available at pharmacies.  

My kid tested negative five years ago.  She is gluten light.  We are retesting because she will be going off to university and we need to accommodate her if she has celiac disease.  She will be tested for anemia too, because that was how I was presented.  Lifelong anemia.  It was just blamed on a genetic anemia and my menstrual cycle.  Decades of problems.  I guess it is why I push for testing.  I hate to see people suffer like I did and told that it was “all in my head” — like anemia and passing out frequently etc. is in my head!  

 

 

Thanks for trying to save me money:) I can't afford to waste time with incompetent doctors. That's why I'm going through a naturopath. I know I'm celiac. And I'm pretty sure my rash is this DH. I also am just itchy all over my body. The back of my head has been itchy for years. And ever since the fall when I ignorantly decided to make bread for my family(not knowing I was celiac, just thinking I shouldn't eat gluten due to sensitivity) my forearms have been super itchy. I don't have bumps though. I have also become itchy on my torso, and other parts of my body, but there's no rash, no bumps, nothing visible except under my breasts where it's red but smooth. I'm really trying not to scratch but it's hard. 

I just booked my husband and kids for the TTG test. It will be next week. I appreciate you telling me that this may not be conclusive and that other testing may be necessary. What are the EMA and DGP tests? I am concerned about my kids(I have five), especially my youngest, who is off gluten. She is six and started getting constipated when she was two. It got to the point where she didn't go for three days, she was so scared it would hurt. I took her off gluten and dairy(she has a little goat yogurt and goat cheese) and she is doing much better. Goes every day now and is mostly over her fear. But she is often quite tired, more than I think she should be, so I am wondering about her thyroid, too. Anyway, I'm happy to have the appointments made to get their bloodwork done for the TTG at least and then I can get all the gluten out of the house!

Another thing I've been thinking about is that last year I went out to eat four times. The reason I remember this is because we never go out to eat usually, being a large family and it's so expensive. But my husband and I went away for our 20th anniversary so we ate out twice. Then my oldest son graduated so we went out for dinner to celebrate. And then my father-in-law came to visit and took us  all out for dinner. This is all in the space of six months. Then I got the rash under my breasts. And I started taking iodine during this time, too. Probably no coincidence, hey?

Thanks for listening and responding. It helps to talk to someone who understands and has been through it. I appreciate you!

[cyclinglady]

I would not test my kid unless I was sure she had been consuming gluten for at least 8 weeks.  In fact, I just got a lab order yesterday for my daughter.  We will not have her blood drawn until we have completed 8 weeks of consuming gluten daily.  Otherwise, the antibodies tests may not be accurate.  Read more about a gluten challenge:

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

The full celiac panel for your future use is:

http://www.cureceliacdisease.org/screening/

https://www.celiac.ca/healthcare-professionals/diagnosis/

I often push for the DGP tests if someone has symptoms and yet tested negative on the TTG or EMA.  Why?  Because I have only had positives on the DGP even in many follow-up tests.  No one really knows why.  I think it indicates that I am special. ?

If your daughter is doing well on the gluten free diet, you might just wait to do a challenge later.  As it is, my teen feels much better gluten free, but maybe it is because I am like Ma Ingalls from “Little House on the Prairie” cranking out non processed food meals.  During my daughter’s challenge, I had her consume crackers daily or bread which I carefully packaged in zip lock bags And placed it in her school lunch.  If she did not eat it, then I had her go outside and eat it when she came home or on the weekends.    Easy to do in California during the winter.  The important thing is getting an accurate test result.  If my kid tests negative again, she can decide to go gluten free or not.  We have autoimmune issues on both sides of the family. If eating well can stave off a MS or Lupus diagnosis, she is going to do it.  She already has Raynaud's Syndrome (blue fingers and toes) which is autoimmune.  

Your daughter may improve, like you, when she is truly gluten free — no cross contamination.  

i hope this helps.  Your best bet is to learn and be informed!  

 

 

[squirmingitch]

Hi there! Welcome to the forum. Cyclinglady has been taking excellent care of you. She jokes about it but I really DO think she's special. 

Y'all have everything else pretty much covered but I did want to address the iodine issue. So yeah, stop the drops unless a doctor ordered you to take them. As far as fish goes, if it's salt water fish then you can cut that out or cut back drastically on it for 2 or 3 weeks. See if the combination of no iodine drops & no seafood makes you less itchy. Oh, also ditch iodized salt if that's what you use. Just use plain salt. If these things help with the itch & redness, then you know where to go from there. You can add back seafood in small amounts until you find your limit. If you're eating fresh water fish then you don't have to worry about them with iodine content & you can just go on enjoying fresh water fish.

[homeschool mom]

3 hours ago, squirmingitch said:

Hi there! Welcome to the forum. Cyclinglady has been taking excellent care of you. She jokes about it but I really DO think she's special. 

Y'all have everything else pretty much covered but I did want to address the iodine issue. So yeah, stop the drops unless a doctor ordered you to take them. As far as fish goes, if it's salt water fish then you can cut that out or cut back drastically on it for 2 or 3 weeks. See if the combination of no iodine drops & no seafood makes you less itchy. Oh, also ditch iodized salt if that's what you use. Just use plain salt. If these things help with the itch & redness, then you know where to go from there. You can add back seafood in small amounts until you find your limit. If you're eating fresh water fish then you don't have to worry about them with iodine content & you can just go on enjoying fresh water fish.

Hi squirmingitch. I'm glad you responded. It was reading your posts that made me joint the forum. I appreciate your advice about the fish. I have stopped the iodine and I will cut out fish(salmon and cod is what I eat) for a few weeks. I use mostly Himalayan Salt. Is that okay? I'd hate to cut out salt because with low adrenal function I really need it. But I will try to cut down on it. Anything else? 

I have to say that now that I know about this skin problem, DH, being related to celiac, it makes sense to me why I have been itchy my whole life, it seems! I have always felt  itchy! But this summer when the rash under my breasts appeared, and now the itching increasing in other areas, too, it's an answer as to WHY. I'm counting down the days to getting the gluten out of my house the day my husband and kids get tested, and I really hope that I will notice a difference in my health, and my itchiness. 

Thanks again for responding!

[squirmingitch]

You are welcome! 

You don't need to cut out the salt all together, just don't use iodized salt. From a quick Google, it seems Himalayan salt is thought not to have as much iodine as iodized salt but I can't find where there has been any testing to ascertain the levels of iodine. 

Yes, cut the salmon & cod for a while. If you're getting better after that but still having problems, then cut dairy & see what happens. But really, with you most likely getting trace cc, it will be hard to know. When you finally get everyone tested & get the household gluten free, then you would be better able to tell how much iodine intake is affecting you.

[homeschool mom]

5 hours ago, squirmingitch said:

You are welcome! 

You don't need to cut out the salt all together, just don't use iodized salt. From a quick Google, it seems Himalayan salt is thought not to have as much iodine as iodized salt but I can't find where there has been any testing to ascertain the levels of iodine. 

Yes, cut the salmon & cod for a while. If you're getting better after that but still having problems, then cut dairy & see what happens. But really, with you most likely getting trace cc, it will be hard to know. When you finally get everyone tested & get the household gluten free, then you would be better able to tell how much iodine intake is affecting you.

Thanks! I am already off dairy:) I'll keep you posted on how things go.

[squirmingitch]

?

[homeschool mom]

On 2/19/2019 at 12:17 PM, cyclinglady said:

I would not test my kid unless I was sure she had been consuming gluten for at least 8 weeks.  In fact, I just got a lab order yesterday for my daughter.  We will not have her blood drawn until we have completed 8 weeks of consuming gluten daily.  Otherwise, the antibodies tests may not be accurate.  Read more about a gluten challenge:

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

The full celiac panel for your future use is:

http://www.cureceliacdisease.org/screening/

https://www.celiac.ca/healthcare-professionals/diagnosis/

I often push for the DGP tests if someone has symptoms and yet tested negative on the TTG or EMA.  Why?  Because I have only had positives on the DGP even in many follow-up tests.  No one really knows why.  I think it indicates that I am special. ?

If your daughter is doing well on the gluten free diet, you might just wait to do a challenge later.  As it is, my teen feels much better gluten free, but maybe it is because I am like Ma Ingalls from “Little House on the Prairie” cranking out non processed food meals.  During my daughter’s challenge, I had her consume crackers daily or bread which I carefully packaged in zip lock bags And placed it in her school lunch.  If she did not eat it, then I had her go outside and eat it when she came home or on the weekends.    Easy to do in California during the winter.  The important thing is getting an accurate test result.  If my kid tests negative again, she can decide to go gluten free or not.  We have autoimmune issues on both sides of the family. If eating well can stave off a MS or Lupus diagnosis, she is going to do it.  She already has Raynaud's Syndrome (blue fingers and toes) which is autoimmune.  

Your daughter may improve, like you, when she is truly gluten free — no cross contamination.  

i hope this helps.  Your best bet is to learn and be informed!  

 

 

Are you celiac then? And what were the tests/symptoms that confirmed it for you? I wonder why you never test positive for TTG? My kids and husband are getting tested next week which I am very happy about, although I'm a bit nervous about what the results will be for them. Can you recommend a good online resource for making a household gluten free? Once their tests are done I'm getting all the gluten out of the house!

[cyclinglady]

The Canadian celiac site is a good place to start.  Most celiac associations or research centers have information for newbies and of course, Celiac.com is a good resource.  Learn to use the search box to query a topic.  In the forum section, under the “Coping” section look for the Newbie 101 thread pinned at the top.  

I am a celiac.  I was diagnosed with a positive DGP IgA and intestinal biopsies.  My main symptom was anemia.  No GI issues.  Two different GIs and my research have not been able to address my repeated negative TTGs and EMA.  

[homeschool mom]

1 hour ago, cyclinglady said:

The Canadian celiac site is a good place to start.  Most celiac associations or research centers have information for newbies and of course, Celiac.com is a good resource.  Learn to use the search box to query a topic.  In the forum section, under the “Coping” section look for the Newbie 101 thread pinned at the top.  

I am a celiac.  I was diagnosed with a positive DGP IgA and intestinal biopsies.  My main symptom was anemia.  No GI issues.  Two different GIs and my research have not been able to address my repeated negative TTGs and EMA.  

Thanks:)

[Awol cast iron stomach]

You got most of the details. I'll just chime in my personal experience. I am gluten, corn, and milk free. I am able to use Himalayan salt and sea salt. My DH has a mind of its own. I can get itching , or patches of eruptions with CC. CC along with high heat humidity weather and physical activity during that time is personally my worst trigger.  It over stresses my body. So when I do get CC which I very much try to keep to a minimum I have to dial back my activity, drop the foods that make me begin to each under my skin, gives me joint, or muscle pain in my inflammatory spots. I also drink tons of water to flush it out ASAP. My mood and a sensation I can describe as a twitchy itchy below the external layer of skin tells me UH OH! In this horrible event I get to my  trusted chiropractor ( who is also celiac) for TCM needles. Yes, I tremor and usual my DH will erupt in patches but I feel it is a slow tolerable release. When I am lucky  I can keep it to my prevalent  areas upper chest, abdominals, butt, back of arms, inner ankles. Drinking lots, toning down activity, drinking lots, and using Epsom salt bath and dandelion tea also helps me.

Taking the house entirely gluten-free I had no idea how much I needed that until we did it. I actually tried to do the shared household (even before I was diagnosed), but my Dr. strongly encouraged in front of my husband we should be entirely gluten-free. He quickly began to purge our house. HE even drinks gluten-free beer and imbibes with the real thing when out of town for business or at our neighbors/ Uncle's house so ours stays gluten-free. Another important discovery we had was my Dr. also explained to him to try giving me coffee from plain whole coffee beans ground only at home. She explained that the tremors and nerve issues I had after coffee was likely do to cc. Sure enough she had it right. For many years I was told it was just a caffeine rush. My upper chest is my "Gate keeper" I have always flushed there as long as I can remember, low and behold it turns out this is my bodies first response to gluten or corn. It took 4 decades, an incomplete gluten challenge, and a food diary to hash this out. Many told me it was anxiety or an alcohol flush. Which as a child my parent's weren't feeding me alcohol, so that meant they just dismissed that I stated I had always flushed there. My husband and I now consider my dietary and immune gate keeper as the it indicates my bodies way of saying stop, don't eat anymore, or don't consume this product again. We heed it's wisdom. 

I gave up many foods over the first 2 years or so and gradually added them in. I eventually added back in fish/seafood. I regularly consume tuna, steelhead, shrimp, and occasional lobster or mussels. I have only ever eaten 3 scallops in my life. I get immediate GI issues and get ill. My Dr. explained this one as well as sometimes scallops can use gluten as a binder to keep small bits of seafood pieces together in the manufacturing.  Each time I consumed a scallop it was at a restaurant so I never knew if it was pure scallop free from gluten binders, and frankly I no longer desire to try. 3 bad experiences were enough. They checked me for fish/seafood allergies and I am all clear. So what I eat and don't eat is based on my symptoms/tolerance. I had a bad reaction to trout last summer and I have no idea if it was cc from the store (a regular trusted store) or if I just can't eat trout. I suspect it was cc. It was summer and the DH flared. I rotate days and rarely do fish/seafood back to back days. 

I found knowledgeable people here like Squirmingitch and cycling lady's advice for an entirely gluten-free household and  not eating out or at anyone's house unless I bring my own food is crucial. I bring my own food to work and I use my own placemat to stay safe, I use gluten-free and corn free makeup,and I make most of my own skin, laundry products, these all help keep my immune system happy and in "stand down position".

Good luck on your journey to uncovering if this is DH or not. I had skins issues diagnosed as many different things for years. Now it is very clear with cc what I am. 

 

 

 

[homeschool mom]

1 hour ago, Awol cast iron stomach said:

You got most of the details. I'll just chime in my personal experience. I am gluten, corn, and milk free. I am able to use Himalayan salt and sea salt. My DH has a mind of its own. I can get itching , or patches of eruptions with CC. CC along with high heat humidity weather and physical activity during that time is personally my worst trigger.  It over stresses my body. So when I do get CC which I very much try to keep to a minimum I have to dial back my activity, drop the foods that make me begin to each under my skin, gives me joint, or muscle pain in my inflammatory spots. I also drink tons of water to flush it out ASAP. My mood and a sensation I can describe as a twitchy itchy below the external layer of skin tells me UH OH! In this horrible event I get to my  trusted chiropractor ( who is also celiac) for TCM needles. Yes, I tremor and usual my DH will erupt in patches but I feel it is a slow tolerable release. When I am lucky  I can keep it to my prevalent  areas upper chest, abdominals, butt, back of arms, inner ankles. Drinking lots, toning down activity, drinking lots, and using Epsom salt bath and dandelion tea also helps me.

Taking the house entirely gluten-free I had no idea how much I needed that until we did it. I actually tried to do the shared household (even before I was diagnosed), but my Dr. strongly encouraged in front of my husband we should be entirely gluten-free. He quickly began to purge our house. HE even drinks gluten-free beer and imbibes with the real thing when out of town for business or at our neighbors/ Uncle's house so ours stays gluten-free. Another important discovery we had was my Dr. also explained to him to try giving me coffee from plain whole coffee beans ground only at home. She explained that the tremors and nerve issues I had after coffee was likely do to cc. Sure enough she had it right. For many years I was told it was just a caffeine rush. My upper chest is my "Gate keeper" I have always flushed there as long as I can remember, low and behold it turns out this is my bodies first response to gluten or corn. It took 4 decades, an incomplete gluten challenge, and a food diary to hash this out. Many told me it was anxiety or an alcohol flush. Which as a child my parent's weren't feeding me alcohol, so that meant they just dismissed that I stated I had always flushed there. My husband and I now consider my dietary and immune gate keeper as the it indicates my bodies way of saying stop, don't eat anymore, or don't consume this product again. We heed it's wisdom. 

I gave up many foods over the first 2 years or so and gradually added them in. I eventually added back in fish/seafood. I regularly consume tuna, steelhead, shrimp, and occasional lobster or mussels. I have only ever eaten 3 scallops in my life. I get immediate GI issues and get ill. My Dr. explained this one as well as sometimes scallops can use gluten as a binder to keep small bits of seafood pieces together in the manufacturing.  Each time I consumed a scallop it was at a restaurant so I never knew if it was pure scallop free from gluten binders, and frankly I no longer desire to try. 3 bad experiences were enough. They checked me for fish/seafood allergies and I am all clear. So what I eat and don't eat is based on my symptoms/tolerance. I had a bad reaction to trout last summer and I have no idea if it was cc from the store (a regular trusted store) or if I just can't eat trout. I suspect it was cc. It was summer and the DH flared. I rotate days and rarely do fish/seafood back to back days. 

I found knowledgeable people here like Squirmingitch and cycling lady's advice for an entirely gluten-free household and  not eating out or at anyone's house unless I bring my own food is crucial. I bring my own food to work and I use my own placemat to stay safe, I use gluten-free and corn free makeup,and I make most of my own skin, laundry products, these all help keep my immune system happy and in "stand down position".

Good luck on your journey to uncovering if this is DH or not. I had skins issues diagnosed as many different things for years. Now it is very clear with cc what I am. 

 

 

 

Thank you for sharing your experience! I am assuming cc means cross-contamination--is that right? I am a celiac newbie so I don't know all the abbreviations yet. I am looking forward to being a gluten-free household! This Thursday, when my family gets their ttg tests I will get everything out. I've already started a little bit. And bought a new toaster:) Do I need to buy new cutting boards? I think so. What about pots and pans? I have stopped taking iodine and eating fish for almost a week now and I already notice that the itching has decreased. The rash still looks the same, though. How long do you think it might take for the rash to diminish? I know there are a lot of factors involved. 

[squirmingitch]

Yes, cc means cross contaminated and here, dh does not mean dear husband but instead means dermatitis herpetiformis. Yes, new cutting boards, new wooden spoons, new teflon pans if yours are scratched, if you have stainless steel pans then washing them well is sufficient, new colander. Here are some links for dealing with those issues.

https://www.verywellfit.com/gluten-cross-contamination-562485

 

https://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf

 

https://www.todaysdietitian.com/newarchives/100713p16.shtml

[homeschool mom]

On 2/25/2019 at 10:43 AM, squirmingitch said:

Yes, cc means cross contaminated and here, dh does not mean dear husband but instead means dermatitis herpetiformis. Yes, new cutting boards, new wooden spoons, new teflon pans if yours are scratched, if you have stainless steel pans then washing them well is sufficient, new colander. Here are some links for dealing with those issues.

https://www.verywellfit.com/gluten-cross-contamination-562485

 

https://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf

 

https://www.todaysdietitian.com/newarchives/100713p16.shtml

Thanks for the tips and the links. The second link didn't work, though. I have a stainless steel colander, so is that okay or do I need to get rid of it? You said in an earlier post that until you went entirely gluten free in your house you didn't realize how much you needed that. Can you explain more? I certainly thought I was fine until my bread-making episode. I didn't eat it but boy did I react! Being celiac is a whole different world than just being sensitive to gluten, isn't it? What exactly did you experience when your house became gluten free? I'm really anticipating this in my house. 

[cyclinglady]

Spring for a new colendar unless you want to hours insuring every little hole is clean.  Flour can actually stay in the air for hours and it tends to settle all over your kitchen.    You breathe it in and can swallow it.  I avoid sitting in bakeries as a result even if they have really good coffee.  ?

[squirmingitch]

22 hours ago, homeschool mom said:

Thanks for the tips and the links. The second link didn't work, though. I have a stainless steel colander, so is that okay or do I need to get rid of it? You said in an earlier post that until you went entirely gluten free in your house you didn't realize how much you needed that. Can you explain more? I certainly thought I was fine until my bread-making episode. I didn't eat it but boy did I react! Being celiac is a whole different world than just being sensitive to gluten, isn't it? What exactly did you experience when your house became gluten free? I'm really anticipating this in my house. 

Let's try that link again:

https://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf

This was not me:

You said in an earlier post that until you went entirely gluten free in your house you didn't realize how much you needed that.

My household has been gluten free since 5 months after my dx. That is when my husband was dx'd. That was about 7 years ago. 

I would never make gluten bread, cakes, fried chicken, pastry or anything involving loose gluten flour in my house - never! I would discourage any other celiac from doing so or from being in a household where someone else is using, baking with loose gluten flour.

If you are talking about being celiac versus being non celiac gluten sensitive - NCGS - then no, it is not a whole different world. There is still research being done on NCGS. It does not cause the gut damage like celiac does but they are not sure if it causes damage, permanent or otherwise, on other portions of the body. They are not yet sure either if it is actually, in fact, celiac disease before it begins destroying the gut - in other words - pre-celiac. Such people do react to gluten and until we know for sure that its not doing any actual damage then they need to be just as vigilant in avoiding gluten as anyone with a celiac diagnosis.

[Awol cast iron stomach]

On 2/23/2019 at 9:45 PM, Awol cast iron stomach said:

You got most of the details. I'll just chime in my personal experience. I am gluten, corn, and milk free. I am able to use Himalayan salt and sea salt. My DH has a mind of its own. I can get itching , or patches of eruptions with CC. CC along with high heat humidity weather and physical activity during that time is personally my worst trigger.  It over stresses my body. So when I do get CC which I very much try to keep to a minimum I have to dial back my activity, drop the foods that make me begin to each under my skin, gives me joint, or muscle pain in my inflammatory spots. I also drink tons of water to flush it out ASAP. My mood and a sensation I can describe as a twitchy itchy below the external layer of skin tells me UH OH! In this horrible event I get to my  trusted chiropractor ( who is also celiac) for TCM needles. Yes, I tremor and usual my DH will erupt in patches but I feel it is a slow tolerable release. When I am lucky  I can keep it to my prevalent  areas upper chest, abdominals, butt, back of arms, inner ankles. Drinking lots, toning down activity, drinking lots, and using Epsom salt bath and dandelion tea also helps me.

Taking the house entirely gluten-free I had no idea how much I needed that until we did it. I actually tried to do the shared household (even before I was diagnosed), but my Dr. strongly encouraged in front of my husband we should be entirely gluten-free. He quickly began to purge our house. HE even drinks gluten-free beer and imbibes with the real thing when out of town for business or at our neighbors/ Uncle's house so ours stays gluten-free. Another important discovery we had was my Dr. also explained to him to try giving me coffee from plain whole coffee beans ground only at home. She explained that the tremors and nerve issues I had after coffee was likely do to cc. Sure enough she had it right. For many years I was told it was just a caffeine rush. My upper chest is my "Gate keeper" I have always flushed there as long as I can remember, low and behold it turns out this is my bodies first response to gluten or corn. It took 4 decades, an incomplete gluten challenge, and a food diary to hash this out. Many told me it was anxiety or an alcohol flush. Which as a child my parent's weren't feeding me alcohol, so that meant they just dismissed that I stated I had always flushed there. My husband and I now consider my dietary and immune gate keeper as the it indicates my bodies way of saying stop, don't eat anymore, or don't consume this product again. We heed it's wisdom. 

I gave up many foods over the first 2 years or so and gradually added them in. I eventually added back in fish/seafood. I regularly consume tuna, steelhead, shrimp, and occasional lobster or mussels. I have only ever eaten 3 scallops in my life. I get immediate GI issues and get ill. My Dr. explained this one as well as sometimes scallops can use gluten as a binder to keep small bits of seafood pieces together in the manufacturing.  Each time I consumed a scallop it was at a restaurant so I never knew if it was pure scallop free from gluten binders, and frankly I no longer desire to try. 3 bad experiences were enough. They checked me for fish/seafood allergies and I am all clear. So what I eat and don't eat is based on my symptoms/tolerance. I had a bad reaction to trout last summer and I have no idea if it was cc from the store (a regular trusted store) or if I just can't eat trout. I suspect it was cc. It was summer and the DH flared. I rotate days and rarely do fish/seafood back to back days. 

I found knowledgeable people here like Squirmingitch and cycling lady's advice for an entirely gluten-free household and  not eating out or at anyone's house unless I bring my own food is crucial. I bring my own food to work and I use my own placemat to stay safe, I use gluten-free and corn free makeup,and I make most of my own skin, laundry products, these all help keep my immune system happy and in "stand down position".

Good luck on your journey to uncovering if this is DH or not. I had skins issues diagnosed as many different things for years. Now it is very clear with cc what I am. 

 

 

 

Edit 3/1/19

I wanted to chime in despite my vigilance my doctor just told me despite the care I have taken to keep my lunch isolated and using my place mat at work, my Dr. Explained it is safest for me not to eat in the work lunchroom. I just experienced my third cc/ DH outbreak in 4 months at work. Sadly, I enjoy socializing with collegues , but my health comes first. Unfortunately I  am unable to share a gluten lunchroom. She explained I am more sensitized and while the cc is not apparent the brain fog and ataxia start after lunch. Truly my gluten-free home is the safest place to eat. I am still trying to figure this workplace eating out.