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Do These Symptoms Sound Familiar To Any Here?


blueshift

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blueshift Apprentice

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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IrishHeart Veteran

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. 

 

IMHO

  • 3 weeks later...
dch028 Newbie

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

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    • cristiana
      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this.  I am not a medical person but it seemed like the extra pressure down there perhaps added pressure to already sensitised pelvic and rectal muscles. Coeliacs can suffer from bloating when they are first diagnosed due to the inability to digest food properly.  Lactose for me caused a lot of bloating and when I came off it temporarily after diagnosis it helped reduce bloating.  Iron supplements and the timing of taking them also caused discomfort and I had to experiment a bit with type and timing before my gut felt comfortable.   Maybe something to think about?   Some coeliacs suffer from constipation - again, just a thought, but perhaps if you had issues with that it might be a contributor.
    • Rogol72
      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    • Mari
      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer  support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead are offering supplements for your symptoms. This has helped you but you are not able to work very much.  The Programs I have seen  online usually have 3 parts. The first is a Parasite cleanse. The 2nd is the Kidney cleanse and the  3rd is a Liver cleanse and gallbladder cleanse. You need to doall these cleanses to have your whole body functioning well. I can only reccommend the program I gave you because that is the one I used and still do. (drclark.net)  When I see a newprovider and tell I have Celiacs and they look skeptical I tell them that when I am gluttoned the reaction happens 8 or more hours later with intestinal painful cramping followed by diarrhea. Providers are willing to accept tha I probably have Celiacs and are more likely order tests such as vitamin levels. Is this what happens if you eat only a small amount of Gluten? You mentioned going to Mayors. 20 years ago many Dr.s wanted to include a celiac screening as a standard test so that more people eould diagnosed and not become disabled. It did not happen but the Federal levgislature did pass a law so that Celiacs could claim deductions for the gluten free food they bought. What were you going to ask the Mayors to do?
    • Colleen H
      How bad can this get ?? Does it go away??  How long ? Thank you 
    • Clear2me
      Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat.  I am going to keep checking. Thank you. The Azure Market looks promising 😁 Take care S
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