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Confused! (And Wanting Advice!)

Athena85

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Athena85 Newbie
Athena85
Posted

Okay,

So quick background, my sibling was diagnosed with Celiac disease about twelve years ago, only after developing Autoimmune Hepatitis, and cirrhosis of the liver... More recently my mom was tested and they said she didn't have Celiac, but was positive for one of the genetic markers.

Currently... I have been tested (not in depth, I think just basic blood test)..and my Dr. said that I was negative for Celiac. Sigh of relief..Except I have had abdominal cramping (which even has extended itself to deep dyspareunia), proctalgia fugax, Reynaud's Symptoms, persistent skin rash that is forever existent on my legs, chronic migraines, and this oppressive exhaustion (which I was sure was chronic fatigue from a mild bout of Mono I suffered years ago). I have had all sorts of CAT scans and ultra sounds so they can determine the cause of my abdominal pains... They've tried Gallbladder, endometriosis, ovarian cysts.. And found nothing, and then I basically get the, umm we've run out of tests look. I have told them my sibling has Celiac, but I am in an area where Celiac is the new Atkins. (frustrating, believe me..especially when I know how serious it can really be for some)

I no longer have insurance so I am stuck...I am in this place where my family are advising me to hold off until I know for sure, and then this frustration of just wanting to feel better. With the background I described, is it worth it for me to go on a gluten free diet? Or am I better off waiting until I get a proper diagnosis? Are my chances significant enough of having a gluten sensitivity that I should even be considering it? I am bad with math so the statistic of 1 in 22% chance if a sibling has Celiac doesn't really provide me with much..

If you made it to the end of this rant. bless you. and Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Since you no longer have insurance you may want to consider just going strictly gluten free. It sounds like they have ruled out a lot of stuff and since false negatives on testing are not uncommon you have nothing to lose. If you really feel you have to have a doctor tell you not to eat gluten then you do need to keep eating it until you can have an endo. Your body really knows the answer though.

Athena85 Newbie
Athena85
Posted
  • Author

Thanks.. I think I have over-saturated myself with crazy opinions and you're right, there really isn't anything to lose by eating healthy and eliminating gluten to see if it helps. I keep reading all of this information and here I am, clinically diagnosed with ADHD and IBS... and Celiac in the family, doesn't seem like trying it out could be negative. Thanks!

mommida Enthusiast
mommida
Posted

Some studies have shown a gluten free diet can help for auto-immune disease.

Doctors are now starting to recognize some patients test negative for Celiac, but when gluten is removed, noticeably improve. It seems to have a higher association for nuerological affects of gluten sensitivity.

Two very good reasons to start a gluten free diet. IMO If you start feeling better, you have a scientific proof that gluten free helped improve your health. :)

GFinDC Veteran
GFinDC
Posted

You may have DH (dermatitis herpetiformis). There is a section on the board for it. DH is a rash that people with celiac disease sometimes get.

ravenwoodglass Mentor
ravenwoodglass
Posted

You may have DH (dermatitis herpetiformis). There is a section on the board for it. DH is a rash that people with celiac disease sometimes get.

Good point. A dermatologist can biopsy the intact skin next to an active lesion but they do have to tell the lab that is what they are looking for. A diagnosis of DH is a diagnosis of celiac and no other testing is needed.

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