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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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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Son's legs shaking

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