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Biopsy Confirmed Celiac And Other Protein Sensitivities, Also Lactose Intolerance....Any Advice?!


sannep77

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sannep77 Newbie

I was just recently diagnosed with celiac disease and the biopsy reults came back just today and confirmed it. I have already been on my gluten/dairy/refined sugar free diet since the day of my biopsy...because we already knew I had celiacs from the results of the blood test. However the biopsy apparently showed that I have other protein sensitivities as well. But when I questioned the nurse further on this...she was absolutely no help at all. She couldn't tell me what other proteins there are that I could be sensitive too or anything. Im really just frustrated that I can't get answers out of medical professionals. I want to take care of my body and let it heal after not knowing of the disease for 21 years...but I don't know what else to cut out because I can't get any answers out of these people! And my stomach and intestines seem to hurt after everything I eat anyways...so I don't know how to determine what it is that is bothering me! Does anyone know of a specialists or have any advice?? It would be much appreciated

Oh and is there a way to be tested for other sensitivities?


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I was just recently diagnosed with celiac disease and the biopsy reults came back just today and confirmed it. I have already been on my gluten/dairy/refined sugar free diet since the day of my biopsy...because we already knew I had celiacs from the results of the blood test. However the biopsy apparently showed that I have other protein sensitivities as well. But when I questioned the nurse further on this...she was absolutely no help at all. She couldn't tell me what other proteins there are that I could be sensitive too or anything. Im really just frustrated that I can't get answers out of medical professionals. I want to take care of my body and let it heal after not knowing of the disease for 21 years...but I don't know what else to cut out because I can't get any answers out of these people! And my stomach and intestines seem to hurt after everything I eat anyways...so I don't know how to determine what it is that is bothering me! Does anyone know of a specialists or have any advice?? It would be much appreciated

Oh and is there a way to be tested for other sensitivities?

Go to the doctor's office and sign a form for release of medical records and request a copy of all your results. They are required by law to give them to you if you live in the US. And I believe most other countries will give you copies upon request. It is probable that you also have a sensitivity to lactose/casein, casein being the dairy protein. You may also, as do many celiacs, ahve a sensitivity to soy. But you do need a copy of your results to clarify.

It is normal for things to take a while to settle down after going gluten free. The best course of action is to eat very simply, with just chicken, fin fish, veggies, fruits and rice and seeds (hopefully a diet which will agree with you) to stabilize. Once you are no longer having upsets then add back in one food at a time every 3-4 days and see how you handle them. Keep a food and symptom diary and follow the correlations between what you eat and how you feel. This is the best way of eliminating troublesome foods. These intolerances/sensitivities may be only temporary and you may be able to add some of these foods back in later when your gut has healed, but right now it is very sensitive and has to be babied a bit.

You can do ELISA food sensitivity testing, but not all insurances cover it and it may not tell you as much as an elimination diet does.

Do remember you must be very strict with the diet and eliminate all potential sources of gluten, in medications, supplements, personal care items. You will need to purchase a new toaster, replace wooden kitchen tools, scratched non-stick pans and plastics, cutting boards, etc. and any colanders/strainers which have been used for gluten. This may sound extreme, in fact some can get away with not doing it, but if you are very sensitive this is what is required.

Good luck on your gluten free journey. Don't forget to read ALL labels!

sannep77 Newbie

Go to the doctor's office and sign a form for release of medical records and request a copy of all your results. They are required by law to give them to you if you live in the US. And I believe most other countries will give you copies upon request. It is probable that you also have a sensitivity to lactose/casein, casein being the dairy protein. You may also, as do many celiacs, ahve a sensitivity to soy. But you do need a copy of your results to clarify.

It is normal for things to take a while to settle down after going gluten free. The best course of action is to eat very simply, with just chicken, fin fish, veggies, fruits and rice and seeds (hopefully a diet which will agree with you) to stabilize. Once you are no longer having upsets then add back in one food at a time every 3-4 days and see how you handle them. Keep a food and symptom diary and follow the correlations between what you eat and how you feel. This is the best way of eliminating troublesome foods. These intolerances/sensitivities may be only temporary and you may be able to add some of these foods back in later when your gut has healed, but right now it is very sensitive and has to be babied a bit.

You can do ELISA food sensitivity testing, but not all insurances cover it and it may not tell you as much as an elimination diet does.

Do remember you must be very strict with the diet and eliminate all potential sources of gluten, in medications, supplements, personal care items. You will need to purchase a new toaster, replace wooden kitchen tools, scratched non-stick pans and plastics, cutting boards, etc. and any colanders/strainers which have been used for gluten. This may sound extreme, in fact some can get away with not doing it, but if you are very sensitive this is what is required.

Good luck on your gluten free journey. Don't forget to read ALL labels!

Thankyou for reading my post! They sent me my lab results. It said The findings are most consistent with celiac disease, although less commonly refractory sprue and other protein allergies may produce similiar changes. Anyways I know that I am lactose intolerant for sure, since I have gone gluten free anytime I have had cheese or any kind of dairy in any form. My stomach hurts and it just does weird things to my body. This has happened for a while of course, but I have noticed more now that I am understanding my body more.

I have been keeping a food/ symptom diary. I try to eat a lot of healthy things, however occasionally I have to have one of those microwavable taste of thai bowls when I am in a rush.

I am a college student, 21, so I still live at home with 6 other people. Therefore buying new everything just isn't going to be possible...I do have my own toaster and colander. And as far as beauty products go. I have sensitive skin, I have unscented body wash...but my shampoo and conditioner always leave little rashes on me. They go away quickly though. However my head itches alot. I probally need an unscented shampoo and conditioner or something. Everything Is so expensive. I wish I had a real job and my own house because if that were the case I would have cleared and threw away everything in the kitchen!! It would make things so much easier. But thats life I guess. You know what would be great a personal gluten free chef!!

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