Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Information "packet" For School


celiac3270

Recommended Posts

celiac3270 Collaborator

Ok... I'm going to a new school next year and the nurse wants me (well, my mom, but my mom and I mutually agreed that I should make it since I easily know the most about Celiac in my family :P ) to make a sort of info. packet on what can and can't eat, how stuff has to be prepared, etc. He has actually shown some personal interest in this and both he and the vice principal have done a little research on Celiac to find out basically what it is. Now, these are the categories...I'm trying to keep it simple:

1) Basic Foods celiac3270 Can Eat -- they have a couple "retreats" (whatever those are) during the year-- 1-2 day things...away from home, in other words, my fate is in a kitchen of people who don't know about celiac. I'll bring my lunch to school every day, so I don't need to worry about that, but for the former, I'll need to make a list of basic things I can eat: rice (not prepared with chicken broth), meat (except when injected or with spices), potatoes, vegetables, fruits, etc. Sure I know what I can eat, but it's a monumental task to list all the mainstream/basic stuff I can have. This is the primary area where I hope to enlist your help! :D

2) Cross-contamination and preparation -- I can handle this one, but basically I'll just explain how my stuff has to be prepared--dedicated pans, the like. No gluten can touch it or it's contaminated.

3) Forbidden ingredients -- I'll provide the list from this site.

4) I'll offer to, if this is helpful, provide them with that Delphi mainstream gluten-free food list and/or restaurant chains that accomodate celiacs.

If anybody else has made a similar packet, I would LOVE to see how you wrote it and perhaps model mine off of that. Thank you for your help everyone!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cdford Contributor

We used the Keep It Simple strategy. I copied a quality restaurant card and used it as a jumping off point. I encouraged them to do a couple of things...generally avoid prepared or processed foods by preparing simple and unadulterated meats, veggies, and fruits. I requested that they keep items such as fresh fruits and gluten-free yogurts (I supplied appropriate brand names) as snacks and quick breakfasts if Jenn noticed a problem with something they served. I provided a few gluten-free specialty items such as pretzels that would keep well and be readily available.

I also asked ahead of time what types of meals would be prepared for things like retreats (this works for both church and school trips) and offered suggestions about creating the meals in such a way that they only had to prepare one set of foods that were naturally gluten-free and feed everyone with it. While that is not possible with stuff like pizzas, it is easy with a "meat and two vegetables" kind of meal. They tended to be open to this when it usually just meant purchasing one brand of frozen veggies or fries over another. Often I just asked which brand they planned to purchase and verified with the mfr that it was gluten-free. Often they were.

We have generally found that if we are positive and helpful, so are those we are working with. There are exceptions to that rule, of course.

You may also want to make a special note on your papers encouraging them to wash their hands carefully between handling of foods...even from stirring one pot to the next. We got caught on this one a couple of times when someone handled a food or spoon then went to the next one without being careful.

Hope this helps.

celiac3270 Collaborator

Hi Donna! Thank you for sharing your experiences. I think I'll just take some of the cross-contamination issues I avoid at home (in my 1/2 gluten-free, 1/2 gluten kitchen). For food, though.......do I actually need to make a list of everything I can eat? Or would it make more sense to just give some suggestions for each meal that are mainstream and difficult to screw up on? I think I'll do that. Thank you for sharing your story!

cdford Contributor

Sorry it took a while to get back on the board. Life got a little hectic. Suggestions would be fine.

I did not really mean everything in my comment, only a "short list" of generally available and easy options. For instance, if they planned to serve chicken, mashed potatoes, and green beans for a meal, I would provide a list of acceptable brands or alternatives that could be prepared easily within their plans. If they were going to have hot dogs and hamburgers, I would do the same and offer to provide our own buns and condiments if theirs were not going to be appropriate. You get the picture. I basically just kept in touch and answered a lot of questions regularly. I tried to ensure that compliance was as easy for them is I could make it so they never felt as though I was asking for some unreasonable accomodation.

They can probably tell you how much they need/want to know. Work within their guidelines and they will appreciate the input. Let me know if I can assist further.

cdford Contributor

One more suggestion...if they have a computer available to them, you might want to consider creating a celiac disease with a couple of food lists and some general information on it. It would be easy to access and provide them with ready information. I provided a similar celiac disease to my gi doc and it is greatly appreciated. If you include links to a couple of sites with general info, they might even get caught up in a little research of their own.

celiac3270 Collaborator

Excellent idea about the celiac disease. I already sent it in, but I'll e-mail the word document to you--you don't have to read it unless you want to, but just so you can see what I ended up putting together.

-celiac3270

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,918
    • Most Online (within 30 mins)
      7,748

    MaryMJ
    Newest Member
    MaryMJ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
    • Jack Common
      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
×
×
  • Create New...