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Problems Getting Diagnosed

fughawzi

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fughawzi Rookie
fughawzi
Posted

I've had issues with misdiagnoses forever, starting with depression at nine when it really was Hashimoto's thyroiditus. I'm getting extremely frustrated. I've had many doctors tell me that I most likely have celiac disease but they are are not comfortable diagnosing me because my Prometheus blood panel was inconclusive and I've been off gluten too long for a biopsy to be any good.

History: I'm eighteen and have been diagnosed with Hashimoto's thyroiditus, chronic fatigue syndrome, fibromyalgia, IBS, and have suddenly developed a ton of food allergies in the last year (soy, rice, apricots, bananas, almonds, chocolate, coffee, sweet potatoes, pineapples, dairy, shellfish, and turkey) when I have never had any before. In April of 2009, my GI ran the blood test and called for an upper endoscopy due to other issues I was having, but implied that I should probably go off gluten. I did and felt a thousand times better (fibro pain basically went out the window and I could actually function). I had to remind the GI to check for celiac, which he forgot about, but he said that he didn't see anything and celiac was very patchy (I had been off gluten for a few weeks). There was no biopsy. I've since been trying my best to avoid gluten, but have been extremely strict for about seven months now.

These are the Prometheus results:

tumblr_l6c6joUTLP1qd01p5o1_500.webp

This has been an extremely frustrating experience and I'm not quite sure what to do. It's very annoying to have doctors tell you that you probably have a disease but refuse to diagnose it, which is something I need for it to be taken seriously by my insurance and other doctors. If there are any suggestion for doctors in the Los Angeles area that may be able to help me, that would be fantastic and I would love you forever.

When I eat gluten: headaches, severe body pain, can barely function for a week or more, severe abdominal pain, body swelling (up to 9 inches at the waist), dermatitis herpetiformis (as told by an immunologist at Cedar Sinai but never biopsied), etc.

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sb2178 Enthusiast
sb2178
Posted

If you've been diagnosed with DH, you have Celiac. Can you get a letter from the immunologist or a copy of your record?

Or the next time you get the rash, get a skin biopsy done correctly?

fughawzi Rookie
fughawzi
Posted
  • Author

If you've been diagnosed with DH, you have Celiac. Can you get a letter from the immunologist or a copy of your record?

Or the next time you get the rash, get a skin biopsy done correctly?

I have the rash currently but my dermatologist said it was too small of an area to biopsy and it was "just dermatitis." I'll try contacting the immunologist again, thank you!

I forgot to mention that I can't even touch something containing gluten. I once tried to bake for someone and the flour actually ate through the skin on my hands. Is this normal?

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    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
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