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pidnit

By pidnit
in Related Issues & Disorders

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pidnit Newbie
pidnit
Posted

I have been dealing with pain for thirty some years.  I have been diagnosed with RA (sed rate high) due to joint inflammation and nodules, OA due to xray, mri results, fibromyalgia at one point because they didn't want to tell me it was all in my head and, I have nodules on my thyroid.  Other than my sed rate being high, my blood work comes back "normal" so, other than the Methotrexate for RA, I am on no meds for pain.  I take Ibuprofen when needed.  I do not take "pain meds" because I have a low tolerance to medication and I just cant function even if I take 800mg of Ibuprofen.  Example . .. I get a cold and take children's cold medicine.  I take 1/2 the dose of a six year old and it knocks me out.  Some days the pain is so bad, I can barely walk.  My husband bought me a hot tub a few years back for my birthday and it is my go to on bad days.   I was tested for Celiac's and came back okay.  The only other blood work that comes back out of whack are MCHC, low . . . MCH, low . . . RDW, high, . . . ESR, anywhere from 20 to 85 but normally around 40ish . . . TSH, 2.0 or below.  But, the doctors say the first three are not so far out of range that we should worry about it, the ESR just means there is inflammation and the TSH is within normal range.  I have recently gone gluten, dairy, and sugar free in an effort to combat symptoms, pain and weight.  I have noticed a difference in the inflammation and in my general overall wellbeing.  I seem to be more attentive, have more energy, and not is no much pain.  My questions are:  Does anyone else have similar issues while all blood work is coming back normal?  And, any suggestions on how to introduce items back into my diet to test for reactions?  Should I start with gluten or dairy?  The sugar I can live without.  Any info would be helpful.  I look things up on the internet but end up with a bunch of pop up ads for things that are going to cure me.  Thanks in advance.  

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Jmg Mentor
Jmg
Posted

Welcome!

2 hours ago, pidnit said:

My questions are:  Does anyone else have similar issues while all blood work is coming back normal? 

YES! Some of us who have problems with gluten do not test positive to celiac tests. There is a term for this, non celiac gluten sensitive NCGS and this could explain your symptoms. Having said that, it would be a good idea if you hunted down the actual results of your celiac tests and posted them here. It's possible that your doctors didn't perform the full range of tests and some celiacs only test positive to one of these. 

2 hours ago, pidnit said:

And, any suggestions on how to introduce items back into my diet to test for reactions? 

I would first double check on the tests, but once that's resolved you could keep a food diary, a very simple not of what you eat, when you eat it and how you feel. You then introduce a new food perhaps one week at a time and monitor the results.

2 hours ago, pidnit said:

Should I start with gluten or dairy?

I would start with dairy but I don't know that there's a right or wrong answer.

Best of luck. I think regardless of testing you've probably found an answer and that you will probably want to stay gluten free.  Either way you've found a good site and you will have lots of support if you need it :)

Good luck.

Matt

Gemini Experienced
Gemini
Posted

I could be wrong but Methotrexate is an immune suppressant so it may affect Celiac testing. I have seen this mistake made with other people with RA.

It may be that the only way you will know if it will help is to continue eating gluten free for awhile and see how well it does with the pain levels you have.  Or...have the biopsy.  But, again, will the medication affect that also?

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