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Can't Get A Diagnosis! Frustrated!


nu-to-no-glu

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ravenwoodglass Mentor
I just registered today. Hello everyone. I am getting tested for Celiacs and Crohn's soon. This is all pretty scary. I've been reading some posts and felt instantly sad for everyone. I'm 41 yrs old. No one in the family with celiacs ( that we know of). I was just wondering....Should my allergist or gastroenterologist test for this? I am so confused with everything. I went into the ER for throwing up for 6 wks from a sinus infection...3 days later...I might have celiacs or crohn's; have a cyst on my ovary; found spots on my lungs, and I am now on a very special gluten-free diet until I am officially diagnosed. Very overwhelming. Oh yea... I am vit b12 deficient. :( OK I am done pouting now. I will read more of your guy's stuff. Maybe I can get a handle on this. After a nap.....Thanks for listening.

The doctors putting you on the diet before they do any testing will cause the tests to be a false negative. However sometimes dietary response is the best test there is. If your doctors are going to test you need to go back on gluten until the tests are finished. Otherwise they will want you to do a lengthy gluten challege which can be a really nasty experience after we have been gluten free and started to heal.

  • 1 month later...

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csoctavia Newbie

hi,

I'm having the same problem with getting a doc on my side.After my son,I gained almost 40 lbs (I'm 5' and never wieghed over 100)and can not lose it.My doc keeps saying its stress or IBS.I had no control of bms and was sick after every meal. I saw on tv this diet were you give up 5 things,one was gluten.I finally started to feel better! After the 21 days I entered everything back into my diet and was fine till I ate gluten.I have been off it for almost 4 months and now my doc just tested me.He sent me to five other docs that all said I should get tested for it,but he didn't agree. Ofcouse the test came out neg.He wants me to eat gluten for 2 months then come back.I don't want to be that sick again!! My doc finally decided that he is not comfortable saying I have celiac disease but if not eating gluten helps,don't eat it.He just told me this yesterday.Don't know what to do next,but maybe I'll just stop eating gluten and say the heck w/docs!!My only advice to you is do what makes you feel good,I take fiber choice in the morn to help with making it to the bathroom,and for your baby,butt paste,you can get it at wal-mart,it will cure the diaper rash up almost immeditly,I swear by it!!Hope I helped,and if anyone has advice for me,please do,I'm pretty much just giving up on docs and living my life now,but if you know how to lose weight,help please!!

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    • Jmartes71
      Im sorry I didn't read until just now, thankyou.its pretty scary because again as I keep stating down played because of what im currently going through and validated by you guys, thank you very much for that because this is mentally challenging especially when asking, begging for medical help.In that note, I looked at my next appointment with gi whose my "new care",i thought. I had  scheduled appointment in March zoom call just to be dump, it was CANCELLED on their part! My appointment isn't there anymore! I do have appointment with Mayo clinic Tuesday on the phone. I also did talk to our local representative in Stanislaus office this past Friday, yesterday and ( Justin) thinks he knows about celiac disease. I don't think he understands because he told me he knows all about celiac! Well Justin why am I dealing with this bs in your county? Hintz the reason why I feel the need to go to city hall meeting yet I  don't have the medical  support....
    • RMJ
      I would not eat it. Some people are more sensitive to small amounts of gluten than others. Until you know how sensitive you are It is probably best to be extra careful. Is this a crustless pizza?  I looked on the Papa Murphy website, clicked on nutrition and filtered by “avoid gluten”. The only pizzas that it said were gluten free were crustless slices. Papa Murphy’s nutrition  
    • Colleen H
      Has anyone had a reaction to gluten free pasta ?  I made ground beef pasta and gluten free sauce and I'm having every symptom there is.  Nausea ,  constipated,   burning pins and needles, anxiety...etc   lots of pain 😞 headache 😭  Does this sound familiar?   I'm literally bed ridden.  
    • Known1
      Thank you for your reply.  I read the same thing about distilled water.  Oddly, drinking that has not caused any sort of reaction in my gut.  Nothing I can hear and feel anyway.  🤣  With that said, I have also switched over to spring water for drinking.  My traditional go to grocery store charges the exact same thing ($1.39) for a gallon of pre-bottled spring, distilled, or RO water.  The manual gallon refills of RO water have an attractive price of $0.49 per gallon, provided you use your own container.  Knowing it causes major bubble gut (and likely other issues) for me, I am avoiding all RO water moving forward.  In fact, I will gladly drink tap before RO water. Here is what Google says when searching "European study regarding reverse osmosis water". --Begin quote: European studies indicate that while reverse osmosis (RO) is highly effective at removing contaminants, it strips essential minerals (calcium, magnesium) and creates low-mineral, slightly acidic water.  Research suggests this may have long-term health implications, such as mineral deficiencies, while also negatively affecting the sensory quality (taste) of water. Key Findings from European Research & Reviews: Health Concerns: Epidemiological studies in Europe have associated low-mineral water consumption with increased risks of cardiovascular disease, cognitive decline, and reduced intake of essential nutrients. Mineral Depletion: RO systems can remove up to 95%+ of solutes, including minerals that are vital for health. Sensory and Quality Impact: Studies show that reducing the mineral content (TDS) of water makes it taste bitter or flat, with optimal, "fresh" taste found in water with a TDS between 190 and 350 mg/L, suggesting post-RO remineralization is necessary for better quality. Regulatory & Safety Context: While not banned, European regulations under the Drinking Water Directive emphasize the importance of mineral content, and countries like Germany often favor alternative treatment technologies that retain minerals. Industrial Application: In Europe, RO is widely accepted for industrial applications (e.g., food, beverage, pharma) due to its high purity output, but it poses challenges like membrane biofouling. Environmental Impact: RO is recognized to use more energy and waste more water (up to 15% more) compared to conventional treatment methods, raising environmental concerns in some municipalities.  Recommendations: Due to the loss of minerals, many experts recommend remineralizing RO water before drinking to improve taste and nutritional value.  --End Quote
    • knitty kitty
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