Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of. I told him about the two celiac blood tests (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope. I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.
We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things. He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being
He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity. He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them. So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens.
I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos. I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months.
according to an article on celiac.com that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html
Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet." Note this research is two years old but hilites the problem with non-gluten rice protein that you are having.
It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's.
She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results.
She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being." which sounds exactly like what you are doing.
If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order. Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs. But rarely do you hear Rice allergy's brought up in context of a gluten allergy.
I am glad you are making progress on finding your triggers.
Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response.
I hope this is helpful.
Good luck on your journey to health.
One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.
I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy.
My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.
And my second question...What accommodations have others found relevant to include on the IHCP & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following:
-access to gluten-free food in classroom & cafeteria
- excused absence from activities that use gluten-containing foods or materials
- prevent cross-contamination in school food service
- use of microwave to heat personal meals
- bathroom priveleges
Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc.
My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.