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Stomach Pain With Undiagnosed Celiac

KimKF

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KimKF Apprentice
KimKF
Posted

We are awaiting the biopsy results for my daughter's Endoscopy (yesterday afternoon). The GI Dr. saw what appeared to be irritation in the stomach lining, appeared to be a small amount of subtle flattening of the villi and a subtle change in the duodenol (sp?) folds. He can't say for certain, we await the results. She has been Gluten Free for 4 days, with little or no food. Still incredible cramping of her stomach (center) - not constant, as she was great this morning, but had her first real light gluten free meal at breakfast (meal included dairy). Then significant cramping followed with still a great degree of bloating. Is this common for the healing process? I figure she has been dealing with these episodes for 15 years, not going to change that quickly. I know that each person is different. Just want to hear that we aren't experiencing anything outrageously unusual. Fortunately, she has had NO diarrhea in 48 hours (no food to speak of either, except this morning). She is afraid to leave the hospital, without having a bowel movement and in that much discomfort, only to end up back there or running around trying to manage pain and diarrhea (already been 3 weeks of that).

The Internist at the hospital, where we finally went to get on with the diagosis, said it is unusual for you to feel this much cramping at this point with Celiac. What???

OH, they put her on a Gluten Free diet in the hospital, but did not suggest going dairy and/or lactose free. What is anyone's opinion on that... dairy and/or lactose??

Thanks much!

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ravenwoodglass Mentor
ravenwoodglass
Posted

It is usually advised to limit dairy when first diagnosed or avoid it completely. The same area damaged by celiac is the area that produces the enzyme we need to digest dairy and many can go back to eating dairy after we heal. Having cramping after consuming dairy is not unusual at all, especially in the beginning.

KimKF Apprentice
KimKF
Posted
  • Author

It is usually advised to limit dairy when first diagnosed or avoid it completely. The same area damaged by celiac is the area that produces the enzyme we need to digest dairy and many can go back to eating dairy after we heal. Having cramping after consuming dairy is not unusual at all, especially in the beginning.

Even hospitals, nurses, internists and general GI's don't have a handle on this, do they??

Skylark Collaborator
Skylark
Posted

Even hospitals, nurses, internists and general GI's don't have a handle on this, do they??

Nope. I'm so sorry to hear she's still sick and afraid to leave the hospital. *grumble stupid doctors* *grumble stupid gluten challenge idea*

To be honest after seeing a friend react badly to a hospital "diabetic" diet, I'd be afraid to even eat a hospital "gluten-free" diet.

I couldn't tolerate dairy at first and I also got stomachaches from soy. For me the reaction was cow casein rather than lactose and I was able to eat some goat cheese without trouble. Once I had been on the diet for a while, I was able to add the dairy and soy back and now I eat them fine.

Is the hospital offering easy-to-digest foods like rice, bananas, and applesauce? If not, you may want to bring her some.

KimKF Apprentice
KimKF
Posted
  • Author

It is usually advised to limit dairy when first diagnosed or avoid it completely. The same area damaged by celiac is the area that produces the enzyme we need to digest dairy and many can go back to eating dairy after we heal. Having cramping after consuming dairy is not unusual at all, especially in the beginning.

The doctor's are making her feel as though it is unusual to have this much discomfort. True? I thought each person was different and after 15 years of this, your body does not heal overnight, especially if they don't tell her to be dairy free.

Does that mean just lactose free? "Cause we know of an incredible nutritional shake that is gluten and lactose free (has 1/3 of your daily nutrients for 21 vitamins, minierals), but is made with 1% milk (still contains the cassein). She LOVES it. Is it ok that it still has the cassein?

I would love an answer, if you would like to email me at kkfellows@comcast.net. I will be bringing the drink up her up to her now.

KimKF Apprentice
KimKF
Posted
  • Author

OH, my gosh!! I love all you people here!! Unbelievable helpful!!!

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