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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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    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
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