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2Nd Doctor Trip,celiac Symptoms Again Need Opinions
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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!

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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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    • Hi lolobaggins, Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet. Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods. Welcome to the forum!
    • Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.) Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).   Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).   You will feel better soon.  
    • Ha!    That happens to me all the time!!!!!  It drives me crazy!
    • "Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more!  http://www.consumerreports.org/cro/magazine/2016/09/index.htm What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick. https://www.sciencedaily.com/releases/2015/05/150515083232.htm Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay!  You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!   That's my two cents!    
    • Hi Schlafentzug, The usual diagnosis process is a blood test for antibodies first, followed up by an endoscopy to check for gut damage.  You have to eat gluten for 12 weeks before the blood tests. It sounds like your brother may have celiac disease also.  His gut lining villi were damaged by something, and villi flattening  is a common celiac disease indicator.  Being shorter than other family members is also a common indicator. The excessive gas is probably from bad digestion.  The gut damage interferes with proper digestion and some enzymes aren't made.  Lactase is made by the villi in the gut. You should definitely get tested and before going gluten-free IMHO.
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