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Do These Symptoms Sound Familiar To Any Here?

3 posts in this topic

I haven't eaten gluten for 10 years although I was never diagnosed. I simply felt discomfort after every meal in my life and, after two bowel obstruction surgeries I came to this site and realized where my issues likely were at the time. I don't have those symptoms any longer.  That is not why I posted here.


I have a niece who has the following symptoms that I copied from an email from my sister and will paste it here:


"Her symptoms started over a year ago. She currently continues to have high blood pressure although on 3 types of meds. Her white blood count continues to be high. She had a bone marrow test already. She has a red molting/rash of her skin on her upper portion of chest, neck and arms. She has constant pain in the sternum area of her chest. She is completely exhausted on a daily basis.  She occasionally has a good day but we cannot trace it to anything specific although she logs daily her activities, diet etc.  She has bloating in the mid drift area. She has seen over 10 specialists all of which cannot determine a diagnosis. She has seen an oncologist, dermatologist, infectious disease doctor, internist, phelobotomist, and has had every blood test imaginable - all with no results. She saw a kidney specialist and they found a small tumor but said not to be concerned about it.  She has been tested for Lupus and other autoimmune diseases.  So it continues to puzzle everyone.  The cardiologist she saw last week is testing her with an electro-cardiogram but is certain her heart is not the problem.  He said she has chronic pain syndrome which has no cure...just treatment with narcotics. Still nothing definite."


Any of this sound familiar?



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My honest opinion? Of course it sounds familiar. We see/hear the same story every day on here.

It does not puzzle me, but I lived these symptoms and more for years before I was in full-blown celiac hell.

Saw dozens of "specialists" who had no answers. 


(1) Was she tested for celiac? DH?


(2) If she has been tested for celiac and it was negative, then she may have NCGS.


(3) "chronic pain syndrome which has no cure"  is BS.  Many docs use this as an excuse to stop looking for an answer. They use "fibromyalgia" and "IBS" too many times to dismiss patients. 


Has she tried a gluten-free diet? It may solve her problems. 




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I  also have undiagnosed HBP. never before in my life before about six months ago.


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    • This is a great information piece on Celiac in Kids esp, followup care.
    • Hey all- just thought I would send an update. I worked out hard but not too long or too hard last week on Thursday- one hour pilates class (which isn't too strenuous to me) and then did squats and some other arm/back lifts. But i couldn't do my third set of squats because my quads were cramping up.I took my Glutamine twice that day, vegan protein and tried to eat more, I tried to avoid more than 1 drink for two days, and waited until I wasn't too sore anymore. and just did pilates reformer on friday.  So I did it! I paced myself well. I missed my normal Monday pilates reformer time (sinus infection now from my last cold ) But did make it on tuesday. Today I only had 1 hour of work out time (the child watch was closing!) so I busted out bench, straight leg dead lifts, upright row, reverse lunges with military press, and then finally squats. Let's just say i went pretty hard compared to last week and got 3 sets in for everything  it was great!. so now I am eating like a mad person, I didn't get any quad cramping this time so that was good. Maybe because I have been off dairy that i am absorbing stuff better who knows.  But I know i have to stay on track with my supplements and eating and not drinking.. much  
    • Cyclinglady -  Negative was also what I was thinking. The reference range at my lab does not give a negative, weak positive, and positive range, rather just a normal range. I just found that while scouring the internet. Seem like a lot of other people on here are give weak positive ranges as well. Anyways, I'm sure I'm reading way into this and it's nothing.  Very interesting that you never presented with a positive tTG IgA with such damage to your intestines.  No mention from my doctor concerning the low ferritin either. I only saw it when I was reading my own lab tests. Do you have any suggestions for what could be causing this? For the full celiac panel, is that something I should probably see a GI for? Thanks again for all your helpful suggestions!  
    • Kept the quote short for ease of reading but yeah I've cut a few people loose in the past few weeks after seeing their reactions. Fortunately balanced out by the positive, helpful comments on here though. Main reason for putting myself through this gluten challenge business isn't so much to get the diagnosis but more to find out just how bad the damage is (expecting the villi to be flat as pancakes so anything less will be a bonus). Over here in UK I can apparently get certain gluten-free foods on prescription with the official diagnosis too so that's the other reason I've been given for doing it. I'm hoping that having done the first week back and took the initial hit that the glutening symptoms may not be as bad for the next 3 weeks. Not quite sure how I've got through it at times but at least I know what the problems are caused by now whereas 6 months ago it was a complete mystery. Managed to summon up all my energy reserves for some sport last night, suffering for it today but forgetting about everything for a while makes it worth the pain!
    • I'd say that TTg IGA is negative and would not consider it a weak positive, but....I am not a doctor!  😏  I do know that each lab has different ranges and you should just compare your results with the ranges the lab uses (not from the Internet).  Your ferritin is low and your doctor should find the reason why it is low.  Again, celiac disease can not be ruled out until you have  the complete panel run.  Why?  I have never had a positive TTG test even in follow-up testing (biopsies: Marsh Stage IIIB).  I test positive ONLY to the DGP IGA.   Get the rest of the celiac panel.  
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