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This Diagnosis Can Be Complicated!

LMM

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LMM Rookie
LMM
Posted

My daughter has been seeing a GI for 3 months. Her celiac panel came back positive, her biopsy was negative. We had to wait 3 weeks to see the doc so I thought maybe we can try gluten free eating. She improved a bit during the 10 days and then the nurse became upset I was trying the diet before the visit so we stopped. She thought she had IBS. We did meet with the doctor, very knowledgable I believe, and he said she probably has celiac so they ran bloodwork for the gene he feels will be there. What do you expereinced people think? I was really thinking there was no way since the biopsy was negative and she only saw minor improvements in 10 days. It has been a week and we wait to hear her latest! Meanwhile she is feeling poorly still-back on gluten until final diagnosis. Yikes! How likely is this for her? How long until she sees improvements in stomach pain and bloating when going gluten free? Thanks so much-as you know from expereince, there are so many questions.

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Lisa Mentor
Lisa
Posted

Since she has had the Celiac Panel and a biopsy, there is no reason not to begin the diet. The gene testing does not require a gluten free diet. Never the less, if your daughter had a positive blood test, she does have Celiac. Biopsies do not always reflect effected areas and can be false negative.

It took me about three to six months before I truly mastered the gluten free diet. It can be difficult to catch all the traps in just a few days. Your best resource is this place.

Wolicki Enthusiast
Wolicki
Posted

Exactly what she said up there, LOL. Blood tests are rarely wrong. Biopsies are frequently wrong. There are over 35 feet of intestine and it's easy to miss a spot. Be strict on the diet. Keep a food diary to be sure she does not have secondary food intolerances and good luck.

gary'sgirl Explorer
gary'sgirl
Posted

My kids took at least a month to show noticeable improvement (granted they are a little too young to really describe pain or lack there of - the oldest is 4 yrs). I have been on the diet for almost seven months now and I have seen very little improvement, so don't give up on the diet. It may just take more time, but your daughter should see improvement after a while.

I wish there was a specific time line, but there isn't... hang in there!

LMM Rookie
LMM
Posted
  • Author

Thank you to all who offered advice. We shall wait and see what the test says. Meanwhile we are learning about the Gluten Free diet. This web site is wonderful!

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    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
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      @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

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