Celiac – need advice

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  • #596043

    oomis
    Participant

    I have someone coming to me for Pesach who has been diagnosed with asymptomatic celiac disease (discovered accidentally during an unrelated endoscopy). I know it means avoidance of all gluten products, but is there anyone in the CR who is closely familiar and very knowledgeable about this condition who can answer a question or two? Namely:

    a) can a person with this condition eat small amounts amounts of gluten products without harm? If so, what is considered too much?

    b) if a non-gluten item the person is eating or will eat merely comes in slight contact with gluten items (such as matzah or knaidlech), can it potentially render that item unsafe to be eaten by the celiac sufferer, even if no gluten was consumed? I know that when i.e., someone has a nut allergy, sometimes just having it in the same room can trigger an anaphylactic reaction. Does gluten intolerance work the same way in some?

    If you really know the answers to these two questions, your input would be very helpful.

    #755102

    oomis
    Participant

    I want to add, the person in question IS speaking to the doctor about this, but the appointment is well after Pesach, and whatever research has been done is confusing to understand.

    #755103

    unless there is some reason you cannot, it seems to me to be the best course to ask your questions to this person, and ask if there is anything else you should know.

    there are varying degrees and various manifestations of celiac disease. whatever answers you get here might not apply to your guest.

    #755104

    oomis
    Participant

    My guest does not yet know really much of ANYTHING. The appointment is well after yom tov (the doc is very hard to see, as he is the foremost authority in NY, and this case is unusual). I had just wondered if any of the people on this forum might either have the condition or know someone with it, and had some experience and basic info such as I asked for (especially the part about food touching food).

    #755105

    Oomis-i have a close relative that has a child with celiac. In answer to quest. 1-no. A person with celiac cannot have any amount of gluten. Even if they won’t necessarily feel the effects,as in this person being asymptomatic,the gluten still damages the lining of the intestine.

    And for your second question,gluten won’t cause the same type of airborne reaction,however,you do need to be careful of cross contamination,I.e. The serving spoons,and the stuff on the plates,use separate serving pieces for anything with gluten. It goes without saying that the celiac sufferer cannot have just the soup from the matzah ball soup,as this is cross contaminated.

    Hope that helped.

    #755106

    2qwerty
    Participant

    Its fine if it touches gluten but sometimes even small amount to eat may cause some problems. Its not as crazy as nuts but try to avoid it as much as possible and don’t cook gluten with non gluten in 1 pot.

    #755107

    oomis
    Participant

    Thank you, Estherhamalka and 2qwerty. Your replies were very helpful. I know I will have to be very careful when preparing for my company. I just wanted to be sure it would not hurt if something I make touches something by accident (not mixes, but just comes in slight contact). I am trying to prepare basically a non-gebrochts menu for the person, but I am told there is gluten hidden in many things that one would never expect.

    #755108

    Health
    Participant

    Listen -IMO, if they are asymptomatic, why refrain from eating gluten products at all in general? If their whole lives they were eating gluten and nothing ever happenned, why stop now? Even if Esther is correct about intestinal damage, continue eating the gluten until symptomatic. Being on a gluten-free diet is very difficult and expensive.

    #755109

    Health
    Participant

    From medicine.net: “Some doctors believe that strict adherence to a gluten free diet can reduce the risk of cancer in individuals with celiac disease, but further studies are needed to prove this. Until more is known in this area, persons with celiac disease should adhere strictly to a gluten free diet.”

    But this diet can start after the person sees their doctor. Going on it before Pesach won’t make a difference for this long-term complication.

    #755110

    farrockgrandma
    Participant

    Pesach, aside from matzo at the table, is (relatively) easy. Go for all the non-gebrocht potato starch products. This past year, some of these bakeries are marketing a year-round line of foods in the supermarkets labeled gluten-free.

    #755111

    am yisrael chai
    Participant

    I’ve been cooking gluten-free for some kids, so I might be able to help.

    I’ve definitely found it easier just to cook gluten-free for everyone; you don’t need to even worry about cross-contamination & you don’t need to remember which dishes contain the offending ingredients!

    Pesach is the easiest time of the year to cook this way…as posted above, just go non-gebroks & you’ll do just fine! Use potato starch instead of matzoh meal in your recipes. That’s it!

    Meal plans will consist of more proteins, fruits, vegetables, & soups rather than grains. Desserts are w/ potato starch & fruit.

    Just make sure to get gluten-free oat matzoh. The Lakewood brand produces it in both the hand & machine varieties. There’s usually one from England (R.Kestenbaum, Golder’s Green), but I haven’t seen it in the stores yet.

    There’s a shehakol Matzoh look-alike from the Yehuda company from E’Y that is inexpensive & tasty. I bought it at Waldbaum’s.

    IMHO, if diagnosed w/ this illness through an endoscopy or blood test, please refrain from eating gluten even if asymptomatic!!!!!!!!!!!!!!!!!! Gluten is a protein that’s more difficult to digest & damages the intestines (as the endoscopy shows) among other things. If one suffers no symptoms from a disease(e.g., high blood pressure, a lump, etc.) but is diagnosed with it, should one just not treat it until symptoms begin to surface? I should hope that people would be proactive concerning their health.

    Hatzlacha, and enjoy your company!!!

    #755112

    Health
    Participant

    “If one suffers no symptoms from a disease(e.g., high blood pressure, a lump, etc.) but is diagnosed with it, should one just not treat it until symptoms begin to surface?”

    You missed my point. Asymptomatic patients should be treated to prevent complications. So I don’t know what you mean by a lump? If you mean a benign tumor that doesn’t have to be removed- what kind of complication is there? On the other hand, hypertension & celiac have complications.

    If someone hasn’t yet been told to go on the GFD, there is no reason to start on your own before Pesach.

    A few more weeks isn’t going to make any difference.

    #755113

    Health:

    “Listen -IMO, if they are asymptomatic, why refrain from eating gluten products at all in general? If their whole lives they were eating gluten and nothing ever happenned, why stop now? Even if Esther is correct about intestinal damage, continue eating the gluten until symptomatic”

    Your opinion is not what most doctors would say about this. We’ve traveled this road and consulted multiple doctors about exactly this issue and were told that a gluten-free diet is a must for patients with a celiac diagnosis even if asymptomatic. Sometimes the gluten can cause damage without there being symptoms and by the time the symptoms start, the damage to the gut is very severe and hard to reverse. I have a friend who went undiagnosed until she was in her 30s so she ate gluten all her life, and her condition right now is very serious. Despite being gluten free, she is taking a very long time to get to baseline and is suffering very much because of it.

    #755114

    am yisrael chai
    Participant

    Health, I respectfully disagree.

    “If someone hasn’t yet been told to go on the GFD, there is no reason to start on your own before Pesach.”

    The OP stated that her guest “has been diagnosed with asymptomatic celiac disease (discovered accidentally during an unrelated endoscopy).”

    The guest is not a child who needs to wait to be told what to do. The guest has a diagnosis of celiac disease & needs to take care of it pronto via a gluten-free diet. Does someone with a dx of diabetes need to wait weeks till after Pesach to be told to monitor the sugar intake? It makes sense to prevent further damage physiologically.

    We’ll have to agree to disagree!

    #755115

    oomis
    Participant

    “Pesach is the easiest time of the year to cook this way…as posted above, just go non-gebroks & you’ll do just fine! Use potato starch instead of matzoh meal in your recipes. That’s it! “

    That is essentially what I decided to do. I want to thank you and everyone else who gave me extremely helpful advice. I have spoken with my guest about this, and I think the decision has been made that it IS best to start now on the GFD. Apparently the damage can be very insidious and not show up for years, by which time it’s a real Chasunah!!! Thank you for the suggestion about the matzah and fake matzah. The problem has been that this person has not received a definitive diagnosis, but all things point in that direction, though there are some anomalies in the test results. Still, i wouldn;t want to be responsible for messing someone up and it is just smarter to play it safe and err on the side of caution.

    #755116

    am yisrael chai
    Participant

    Oomis, thanks for your post. I felt so strongly about this topic, that I actually signed up for the CR! I give you a lot of credit for doing what is best for your guest & not what is easiest!

    An endoscopy is a definitive method of diagnosis. Just be aware that there are people w/ negative results in blood tests & endoscopies who felt better on the diet. (People who have a gluten sensitivity rather than allergy or celiac sprue.)

    Except for the matza, the diet does not need to be more expensive. It’s actually quite simple once one gets used to it!

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