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2Nd Doctor Trip,celiac Symptoms Again Need Opinions


Tiredsean

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Tiredsean Explorer

Hello all, Im going back again to doctors Friday after another episode need opinions. I was doing pretty good since my last body episode right after Xmas.The only symptom I retained was neck tension and shoulder tension.My cold feet,shortness of breath and heart palpatations were gone.I only had an actually head cold that's about it.Then this Friday I ate a huge plate of spaghetti. About an hour later I crashed hard,became really really tired and fell asleep.Saturday I woke up but had a bad sleep, felt nervous feeling while sleeping.I then noticed I had cold hands and feet plus ear ache and muscle tension but worse.I also noticed my hips. Hurt,butt muscles ached,and my ache under left ribs was back. So I didn't do much Saturday or Sunday and took Monday off cuz I was tired again and constipated.Today my feet weren't as cold or hands, and only this morning i had shortness of breath which cleared up after pounding down water and fruit.I also had more strength today not as tired.It seems to me ( this is my opinion), that everytime I back off gluten and then reingest its 10 times worse?? Make sense? Also how long should it take for my vile to heal so my muscle tension would go away or deminish ? If this is celiac my god how bad have some of your reactions been? Are mine worse than normal? I'm going back to docs Friday I need to know whats going on! Sooooo many tests all neg so far


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Have you had celiac testing done? Thyroid testing? not just a TSH for thyroid!

Tiredsean Explorer

Have you had celiac testing done? Thyroid testing? not just a TSH for thyroid!

I had the thyroid tests t-4 and tsh apparently both normal ? Ill be asking for my physical results(paperwork Friday) .Also iron and vitamin deficiencies however not sure which ones? Same for red blood cell,white blood cell, urine test for liver, and diabetes.They also checked me with camera down my throat and nothing. Symptoms I've always had since my teens was either constipation,or overdrive like going excessively.Heart burn A lot!! Since my 20's always had tums or Rolaids.And for the past 7 years or more random left ear ache.And heart palpatations. I've had stomach specalists check me , heart specalists running EKG and sonogram.Mris of spine and shoulder ,numerous X-rays .So much blood work, ENT specalist etc.I seem to have chronic sinus inflammation.I had allergy testing ( soy,hazzlenut,peanuts,pollen,dust mites,pollen,apples) I also had a gluten test done ( not celiac) came back negative. Can I ask you how long your symptoms last when you ingest gluten? Days/hours /week? And are they severe like mine above?

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    • Jacki Espo
      Hi there @Pamp8  yes I've had dermatitis herpetiformis and a negative test for celiac and a negative biopsy. I had stopped eating gluten before taking the test.  I have had an inconclusive genetic (?) test.  I developed the same all body rash.  It was one of the worst experiences of my life and I am sorry you're experiencing it.  What helped me: 1). I stopped eating oats of any kind. 2). I also took some anti-biotics that were not prescribed for dermatitis herpetiformis but I read they could help. 3). Salty food exacerbates it for me.  Now I have a small flare up any time I get cross contamination like from french fries or a shared grill at a restaurant but it's not as bad as it used to be.  Wishing you relief soon. 
    • trents
      Welcome to the forum, @Pamp8! As to your first question, it is possible to have only the epidermal form of celiac disease but it is not common. Most people who have dermatitis herpetiformis also have damage being done to the villous lining of the small bowel.  As to your second question, most likely you are getting some gluten contamination from an unknown source on occasion that you are unaware of and are not suspecting. It could be something like in a medication or supplement you are taking or an oral hygiene product you are using or a spice you are using in your cooking. You might also look into a low iodine diet as iodine is known to exacerbate dermatitis herpetiformis. As to your third question, many who suffer from dermatitis herpetiformis find it is a stubborn problem and difficult to completely control.
    • Pamp8
      I'm new here, although in the past I know I've read some of the messages.   My doctor and I have long suspected that I have celiac. I have several other autoimmune illnesses. But, my celiac biopsy was negative, so I started eating a lot more gluten.  Over the last several years, I've had minor bouts of an extremely itchy rash that I was correlating to gluten, but it wasn't very bad and would improve in a short amount of time. Last year, I had a bout that was a bit worse, but it went away rather quickly, so I didn't think too much about it. Fast forward to this year. I have had a REALLY BAD case of it, for a few months, so I went to a dermatologist, and she diagnosed dermatitis herpetiformis without a biopsy. It was pretty obvious to her that it is dermatitis herpetiformis, but she said that if I wanted her to, she would do a biopsy. She said that I have just become more sensitized over time. She prescripbed Dapsone gel, which helps a lot, but I run out of it long before I'm eligible for a refill. So, I am going CRAZY. It is on my arms, legs trunk, everywhere, and it itches like chiggers. If I get even the slightest bit sweaty, it is so unbearable. I've been 100% gluten free since April, but it keeps flaring up. (I've been under intense stress, too.)  My questions are:  1.) Do many people have celiac without a positive celiac biopsy?  2.) How long will the dermatitis herpetiformis persist, even though I'm 100% gluten free? 3.) Is my story a common one? Thanks so much!
    • leenora
      P.S. I also suffer from Meniere's and Hashimoto's thyroid disease, osteopenia since 40 y.o. These all were diagnosed before the Celiac Disease! And I believe it is all interconnected.
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