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new symptoms, pleasevread and advise

gypsyl

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gypsyl Newbie
gypsyl
Posted

A little background- Almost 3 years ago I contracted Fifth Disease (childhood rash disease like measles, I work in elementary) which presents in adults with horrible joint pain. Since then, I have had recurring joint pain lasting from a week to a month with seemingly no cause. Sometimes it would occur just before I was sick with a cold or something minor, as well. As far as I could recollect, this was the beginning of my joint pain. However, recently my doctor looked back in my records and she states I did complain about joint pain before Fifth disease. This joint pain is everywhere, but worse in my extremities and also worse in my left arm. 

It always went away and I had no other recurring symptoms. That is, until this past August. It started like normal. Joint pain all over, but after 3 weeks it was just getting worse. Then I began also have muscle pain, when I moved and also just when I was touched. Then the nerve pain started. Pins and needles and a painful numb type feeling, especially in my left arm (like I slept on it wrong but the dead feeling does not go away). Every day since August it has gotten worse and worse. I have had countless blood tests; I have seen a rheumatologist who ran further blood tests to check for immunity issues. Apparently I am perfectly healthy! 

Then, about a month ago, I began vomiting, maybe 4 or 5 times a week. My doctor just keeps upping the Gabapentin she recently prescribed me. From 100 to now 900 mg a day in less than 2 months. I checked over my own blood results and looked up everything I could. I had one result, ALP, that was low. When I looked it up it said that was an indicator for Celiac Disease. I asked my doctor about Celiac but she dismissed that idea. But I keep getting worse, literally daily! 

Saturday, I cut out all gluten. I figured it couldn't hurt. No one NEEDS gluten. It appears that my symptoms are now going in reverse. They are fading in the reverse order they presented. They are by no means gone and I am still in pain all over, but I can feel a difference. 

Anyone had a similar experience? I am 39 years old and have never had dietary issues aside from IBS caused by stress. Please advise if you have had a similar experience. I hate not knowing what is going on with my body and I hate taking medication of any kind! Thank you for reading all this! 

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mommida Enthusiast
mommida
Posted

A viral illness can trigger Celiac.  Gluten is a complex protein chain for the body to break down.  Avoiding gluten when the body is under stress from an auto-immune disease seems to improve symptoms in many. 

If you want to get a "gold standard" medical diagnoses, you have to continue eating gluten.  Your doctor should have tested you when you requested it with IBS and joint pain symptoms.

bartfull Rising Star
bartfull
Posted

Yes. If it were me I would continue eating gluten and DEMAND the full celiac panel. After all, you are paying the doctor so that makes you in effect, the boss. If your doctor still refuses, tell him or her you are going to find a doctor who WILL.

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    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
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      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
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      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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