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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    Enzymes for EPI digest fat, protein and carbohydrates. There are over the counter digestive enzymes too, but they aren't regulated as well as prescription enzymes. Problems with dairy are more likely due to lactose intolerance. Lactase is produced in the tips of the villi. There are lactase supplements available too, or you can find lactase in enzymes...
  2. dilettantesteph
    I had problems with high fat too. Then I learned about exocrine pancreatic insufficiency. https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bexocrine+%2Bpancreatic+%2Binsufficiency Pancreatic digestive enzymes fixed that. I seem to only need them for a few weeks when I have been glutened.
  3. dilettantesteph
    We had the same problem. That looks like a great solution.
  4. dilettantesteph
    I don't think that digestive enzymes will help you unless you aren't producing your own digestive enzymes. After a glutening I get bad diarrhea from malabsorption that resolves if I take digestive enzymes. After healing I can back off on the enzymes. I can't see a reason why they should make you feel worse. Are they gluten free? I thought that I reacted...
  5. dilettantesteph
    Good news
  6. dilettantesteph
    It won't be like this for the rest of your life. You are healing still. You are learning about what you can and can't eat still. It will get better as you figure things out. It is really hard at the beginning to tell what is making you sick. It might be better to eat pretty simply and not eat out for awhile to simply matters. It has only been a little...
  7. dilettantesteph
    I think that your plan sounds good. That is similar to what we did. We came to the more strict diet gradually. We did have problems with the cafeteria. My son's school was unwilling to make any chances to cafeteria protocol and he seemed to get constantly glutened there until we arranged for him to eat elsewhere. That was around age 12. I imagine that...
  8. dilettantesteph
    Gemini says: "I would only go ahead with a more restricted diet on the advice of someone like Fasano because the condition of "super sensitive" is not recognized by the leading experts in the field." This is an opinion. My opinion is that Fasano would not have published this paper if he did not recognize the need for this diet for some individuals. ...
  9. dilettantesteph
    I think that people want very badly to feel certain that their diet is safe.
  10. dilettantesteph
    Before diagnosis our family ate that fake meat made of wheat gluten too. What a thing for celiacs!
  11. dilettantesteph
    I had found out that I have to eat like this by trial and error before the study came out. I'm glad that it did so that I don't seem quite so crazy. LOL It's easier than it looks. You get used to it. They say only rice, so that does not include quinoa. It says "Unflavored, unseasoned dairy products are introduced on week 4." which would include the...
  12. dilettantesteph
    I don't think that a 504 plan would likely require a note sent home about the treats. That probably depends on the individual teachers. In my experience most are great and only a few aren't. Most e-mailed me about what would be safe and were going to purchase treats for him themselves to have on hand in the classroom for such occasions. We provided our...
  13. dilettantesteph
    Have a look at this study: Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients Open Original Shared Link I don't know if that is the most likely problem, but it is probably the easiest to investigate. I hope you can find the problem.
  14. dilettantesteph
    I'm sorry. What a situation! I get confused too when I'm glutened and make poor choices. Can you afford a hot plate for your room? Your can get one for under $20. A small fridge? Under $100. A microwave? Under $60. I think that's your best bet. There aren't enough calories in lettuce to survive. Do you have any farmer's markets in your area...
  15. dilettantesteph
    I live in NY state. I have talked with the superintendent of schools as well as disability lawyers. The way they do it in my district is that you must sign permission for the district doctor to talk to your child's doctor to obtain a 504. Then the district doctor and administrators decide on what accomodations need to be made. The principal and school...
  16. dilettantesteph
    My son's doctor told him to vomit on the teacher. The school decided that the vomiting was school phobia rather than celiac disease. I don't know how they had the medical training to overrule the doctor, but that's what happened. The district physician talks to the doctor and then makes the decision on how the child is to be accomodated or not. Fortunately...
  17. dilettantesteph
    It's a several week long process to get over a glutening for me too. I need to watch that I don't get impatient and limit my diet further than necessary. I hope that you get things figured out. It can be difficult.
  18. dilettantesteph
    I believe, based on experience over the last 6 years or so, that trace amounts build up slowly to cause a slowly worsening reaction. I don't think that there is a big tipping point to full blown symptoms. I think that there was a larger consumption in play. There may have been a crumb picked up somewhere, or perhaps a batch of some product with some contamination...
  19. dilettantesteph
    I have an idea that you could try before giving up on him completely. I can see how it is hard for him to believe this stuff 100%. This can be expecially problematic with super sensitivity where there is much less certainty about what can cause problems. Perhaps if you describe it as a risk rather a certainty, he would be more accepting. Perhaps if you...
  20. dilettantesteph
    Celiac disease can cause delayed puberty: Open Original Shared Link Open Original Shared Link Open Original Shared Link Open Original Shared Link I agree with Irish about the diagnosis. If you want to be taken seriously by medical professionals, school officials etc. in the future, you would be better off getting a solid diagnosis before starting...
  21. dilettantesteph
    I have avenin enteropathy in addition to celiac disease, I believe based on a severe reaction to gluten-free oats. Other than that, other food issues seem to be caused by damage from glutening and are temporary until the gluten is removed from my diet and the damage has healed. With frequent glutenings, there can be ongoing problems. I get most...
  22. dilettantesteph
    Sorry guys. I wasn't trying to scare anyone away from corn. I was trying to do the opposite by suggesting that she may still be able to eat corn in the form of corn on the cob. I found that to be the case for my son and me. I made some poor word choices and got a little carried away feeling like I needed to defend my position.
  23. dilettantesteph
    This link: Open Original Shared Link was for a study where 7 of 148 samples labelled gluten-free in Canada were found to contain more than 20 ppm gluten. Being aware of possible problems like this is important when we are trying to figure out why we are having symptoms. When I got constant assurances that things were safe for all celiacs when they were...
  24. dilettantesteph
    In the 4th link above, the corn was found to contain 82 ppm gluten. At the time, that was considered too low a level to cause a gluten reaction, so it was concluded that some celiacs react to corn. Now we know that some celiacs react to 82 ppm gluten. I gave it as an example of celiacs reacting to contamination in corn products.
  25. dilettantesteph
    Thank you for the observation, Irish. I must have typed that up too quickly. Clearly the corn on the cob I ate without problems was also a corn crop. I should have said gluten contamination of some corn containing products or something like that. I don't know at what point in the process the contamination occurs. I do know that I have bought whole...
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