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How Do You Wait For Testing, Eating Gluten And Feeling This Horrible!

KimKF

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KimKF Apprentice
KimKF
Posted

How does MY daughter continue to eat gluten thinking it may be the culprit for a test that is 9 days away, when she continues to have major stomach pain, diarrhea, nausea, throwing up, bloating, no energy, never leaves the house. Can't eat, can't sleep, drink water and toast (if possible)?

Doctor prescribed dicyclomine for the stomach cramps and it helps only marginally. She is afraid to take it now, as she got sick (threw up) after taking it this morning (not sure if that was it).

She has Hashimoto's Thyroiditis, which many say is directly correlated to Celiac. And, no one ever mentioned Celiac, even after she was having diarrhea and stomach cramps for two weeks (going on 3 weeks now) and given her history (below). Her doctor says she has an impressive Auto Immune history in her family and we await the Celiac Gene Blood test. I have no faith in that as I know that those can be inconclusive (Neg. Celiac Blood Panel).

Odd thing is, we would never be exploring this option if we hadn't have done our own research and found a connection between Hashimoto's Thyroiditis (diagnosed this Spring) and Celiac.

Help!!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I would contact her doctor and stress how seriously ill she is and see if the endo can possibly be moved up. They may be able to put her on a cancelation list so if someone else cancels at the last minute she will be able to slide into their spot. The fact that she is not able to keep anything in her system may cause a false negative with the testing anyway.

You also may want to consider just starting the diet. If you do decide to go with that just let the doctor know that you are. I would start her with plain white rice, perhaps some chicken breast baked with no seasoning and very bland veggies like maybe peas and some sweet potatoes boiled or baked. If you can find Pocono Cream of Buckwheat cereal that may be well tolerated also. It has a good amount of protein and despite the name it is not wheat related. The reason why I advise the Pocono brand is because they are totally dedicated from field to processing plant. There is no chance of CC with that brand. No dairy and no soda's, tea or coffee until she is feeling better.

dii103 Newbie
dii103
Posted

How does MY daughter continue to eat gluten thinking it may be the culprit for a test that is 9 days away, when she continues to have major stomach pain, diarrhea, nausea, throwing up, bloating, no energy, never leaves the house. Can't eat, can't sleep, drink water and toast (if possible)?

Doctor prescribed dicyclomine for the stomach cramps and it helps only marginally. She is afraid to take it now, as she got sick (threw up) after taking it this morning (not sure if that was it).

She has Hashimoto's Thyroiditis, which many say is directly correlated to Celiac. And, no one ever mentioned Celiac, even after she was having diarrhea and stomach cramps for two weeks (going on 3 weeks now) and given her history (below). Her doctor says she has an impressive Auto Immune history in her family and we await the Celiac Gene Blood test. I have no faith in that as I know that those can be inconclusive (Neg. Celiac Blood Panel).

Odd thing is, we would never be exploring this option if we hadn't have done our own research and found a connection between Hashimoto's Thyroiditis (diagnosed this Spring) and Celiac.

Help!!

I am currently going through the same exact thing as your daughter is. I have the same medicine that she has and haven't left the house in days because of the constant pain. Just watch what she eats, I found that eating white rice, and chicken helps me a little bit. I was told to stay away from sodas, chocolate, coffee, and candy. Try and find a few certain foods that make her feel okay and have her live off of that for the reminding days. Its difficult and I no how she feels so I hope she feels better soon!

sandsurfgirl Collaborator
sandsurfgirl
Posted

And none of these idiot doctors go "Hmmmm, my patient is violently ill eating gluten. Maybe they have .... uh.... celiac disease! Let's just screw the test and give the diagnosis." But of course the morons won't do that. They want you to suffer so they can charge the insurance for an invasive surgical test.

Personally I refused to do that. I had one of the 5 blood tests come back positive and I went gluten free. Changed EVERY single part of my life including my personality and emotional state.

Ask to bump up the endoscopy. Demand it.

KimKF Apprentice
KimKF
Posted
  • Author

Thanks to all!

Went over to see my daughter! I told her she wasn't sitting in the fetal position one more minute! I took her to the ER!! She is now in the Hospital with fluids, pain meds and anti-nausea meds. Nurse is well versed in Celiac and is incredibly helpful. I told her she wasn't leaving the hospital until the Endo was completed. Then she can work on the rice and chicken (they told her to continue with Gluten until her Endo). Her GI doctor said we are on the right road! Hope so!!

Wheels are in motion and the squeeky ones get the grease!!!

Again, thanks to all!!

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