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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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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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