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New Here! The Short Version Of My Story :)


Jdorrferball

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Jdorrferball Rookie

Hello everyone!  I have been reading over this wonderful forum and have been so blessed by the information and support here!  I'm a 40 year old mama of 10....no that is not a typo :) My 10th child was born almost 8 weeks early when surgery for a perforated colon left me waking up to full blown labor (which they initially thought before surgery was a ruptured appendix...couldn't really tell what was going on because of my big pregnant uterus)!!  They removed about a foot of my intestines and told me it looked like Crohn's disease.  I had been suspicious of something like Crohn's for about four years but had ignored my symptoms, which had come on very suddenly after the birth of my 7th child.  I started having problems with loose stools.

 

Fast forward to a couple of months after my perforated colon and I started suspecting some gluten intolerance in some of my children.  I have one autistic child, one who is kinda quirky, one who has overdramatic anger outburts, one who has fallen way off his growth curve, a 15 year old who has an unexplained ferritin level of 3, a few with terrible eczema etc etc.  I also started developing this new rash of my own on my elbows and forearms.  The rash is somewhat itchy but not terrible...looks almost like bites.  We went gluten free for about two weeks.  My rash cleared up right away and I really got suspicious for celiac.  So back to eating gluten we went so that we could pursue some testing especially since during this time my 15 year old was found to have the low ferritin level.  The morning after we had our first meal with gluten, I woke up with the rash.  Two of my kids threw up.  Those same two have not really felt like themselves since going back on gluten...headaches, dizziness etc.

 

I guess my questions are 1) Could this rash be DH if it isn't intensely itchy? 2) Am I imagining that my kids throwing up, the headaches, the dizziness etc are from gluten after only a two week break from gluten?  I'm getting ready to have a celiac panel done.  My GI agreed to order it no questions asked so I feel fortunate!!  I'm sure I will have more questions but figured I would start with this.  Sorry if this post sounds scatter brained...did I mention I have 10 kids? :D


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pricklypear1971 Community Regular

1) yes, it could be the early stages of DH. Going on/off gluten can increase the intensity (apparently). It also may recede and flare on its own, and increase intensity.

2) No, you aren't imagining the increased symptoms - going off gluten then back on can increase the intensity of symptoms and create new ones.

I hope this is the answer for all if you!

stanleymonkey Explorer

My husband was told e has Crohns, and had his gall bladder removed, since the all badder surgery he asnt eaten as much wheat and es only ad one Crohns flare andvthatvwascwhen we has pasta 3 days in a row, we are beginning to think e was mss diagnosed with Crohns instead of celiac as when he was diagnosed celiac was pretty much unheard of

greenbeanie Enthusiast

Wow, sounds like you have a lot going on! I'm glad your doctor seems willing to order the tests.

I also had a very strong (much worse) reaction when I resumed eating gluten for testing, and I'd only been gluten free for 12 days. My hair started falling out, ataxia worsened, intestinal symptoms and joint pain worsened, etc. At first I thought I must be imagining it, but the hair loss was the one symptom that was objectively clear, so that's what finally convinced me that I wasn't just imagining how much worse it was. It just seems so unlikely that a very short gluten-free trial can have such an effect - but it can! I was especially surprised because I'd been gluten-light for years anyway, so totally eliminating gluten for those 12 days wasn't nearly as much of a change for me as it would be for many people.

Jdorrferball Rookie

Thank you everyone for your replies!  Yes greenbeanie, we do have a lot going on!  Never a dull moment in this house for sure.  It is reassuring to me to hear that other people have had strong reactions when eating gluten after such a short time gluten free.  My hubby, though he tries to be supportive, looks at me like I'm overreacting when I say "I know it's from gluten" in regard to the headaches, vomiting etc.  Can't wait to have these blood tests and see what they show!

 

Thanks again :)

Nahla Newbie

Hello everyone!. I am new to this site. I stummed acrossed it while goolgling this new condition I have encountered. I broke out with this terrible rash about a year ago. My doctor told me it looks like an allergic reaction to either soaps from laundry detergent or bathing soaps or the rubber latex in my bra, which the rash seemed to follow along where the bra touches my body. I am very allergic to rubber and latex. But this rash has not gone away. I have not changed any cleaning products. The rash has gotten worse. I am worried. I am allergic to so much now as it is I can't deal with more. I had another doctor look at at the rash. He said but was not for certain that it could be DH / celiac disease. He brought pictures up on the computer which looks just like the rash I am experiencing. So now I am on a quest to learn more about this condition till I get to my primary doctor for her to advise me to the next one to figure out if thats what I have and how to treat it. Because, it is very painful and itchy. I can not stand to have a bra on. Please excuse me for the males in here.

 I have found this site to be very informative. I have learn so much already. It looks like there is a lot of supportive people here. Which I can use about now. Being that I do not know which way to turn.

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    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
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