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I Have So Many Questions!


susiek

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susiek Apprentice

I just learned my health history 2 years ago, when I located my birth family. There is a lot of lupus, rheumatoid arthritis, sclerodarma (my mother had lupus, scleroderma and a host of other illnesses; she died in 1972). My 3 sisters all have rheumatoid and two have lupus. My mothers identical twin sister has lupus.

My 4 brothers seem to have escaped all of these problems, but one has been diagnosed gluten intolerant.

Is gluten intolerance hereditary? If I was tested for rheumatoid/lupus etc recently, and all came back negative, does that mean I don't have celiac? Are they the same tests or different? When these tests were run, I was diagnosed anemia. My doctor blamed it on heavy menstrual bleeding.

I know these questions have probably been asked before, but I can't find anything using the search feature! Please forgive me for asking again!

I have been sick since the end of April. I had a stool test to check for e coli, salmonella, and parasites, all which came back negative. Symptoms are better, but I am nowhere back to "normal." The horrific cramping and pain seems to have passed, but the diarrhea is ever-present and the milder cramping.


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mamaw Community Regular

Hello

I think you should do bloodwork for celiac sprue.I'm gluten intolerant but my daughter and one of her children are full-blown celiac and the other child is like me intolerant. Also you could do the Dna testing since it appears your not sure of your family history. I think even grandparents didn't tell what illness' they had so alot of info is lost on the medical history of many families.

I wouldn't stop until I got all the info from tests. I think alot of people have been dx'd incorrectly and not tested for this.And you must remember many never show outward symptoms so they don't know..... NOt everyone has reactions and then some get violent reactions when they sniff anything close to wheat or gluten.....

I was told not to worry but I couldn't get feeling better so I took myself off all wheat & gluten and it has helped my pain, rosacea, itchyness,sadness, hives & rashes. It was the best thing I ever did for myself.

mamaw

rinne Apprentice

I am new too and I think there can be a problem with getting a diagnosis. Have you been reading through the threads?

This is a great forum and I'm sorry not to be so helpful but I have to sleep, just ask more questions. I think you may have found a place where you will find some answers.

Welcome. :)

DingoGirl Enthusiast

Hi susie, and welcome.

Yes, gluten intolerance can be hereditary, or developed over time, from what I understand. Celiac is a genetic auto-immune disease. All of the things you describe sound strongly Celiac-linked. I would suggest you keep researching Celiac, and read this board and digest as much as you can. There are so many brilliant people here, and we've all been through it, you'll find answers. Your symptoms sound very much like Celiac, and unfortunately, most doctors in this country don't know about it.

Have you removed gluten from your diet? If you do, and then get tested later, your tests will not read the same - i.e. they will not show the reaction to gluten if it's not in your body. I would try and find a doctor who knows about Celiac, a good gastroenterologist.

Keep reading and asking questions here - it takes a bit of time but you'll find the answers.

God bless - -

Supergirl Rookie

Hi there,

When I first started having problems, I was tested for Lupus, rheumatoid arthitis, Lyme disease, and many other things I don't even know the names of. They all came back negative. I mentioned to the rheumatologist that their was a family history of Celiac, and he said..."oh, we'll test for that too." The blood work came back positive for that. The Celiac blood test is different that all the others, so if you suspect it, see if your doctor will check it. I hope this helps.

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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