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I Need Help!

flagbabyds

By flagbabyds
in Coping with Celiac Disease

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flagbabyds Collaborator
flagbabyds
Posted

So after 2 visits to the ER just found out that I am not only celiac, but highly allergic to casein, soy, corn, wheat. Please any food ideas needed!

I have no idea what to eat right now, and just got back from school from taking the California High School Exit Exam and just ate a piece of home made bread w/ peanut butter. Not enough food!

Thanks!

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Guest nini
Guest nini
Posted

try to stick with foods that are closest to their natural form, veggies, beans, fruits, do you eat meat? rice, potatoes... maybe you can do quinoa? I know it sounds very restricting, but I bet with some creativity and ingenuity you can come up with some great options.

good luck!

darlindeb25 Collaborator
darlindeb25
Posted

I can handle soy letichin and a tiny amount of cornstarch--strange, last I knew I could eat fresh corn too, but I can't tolerate corn flour, chips, anything like that. I also can't eat tomatoes in any form. I eat chicken breast, cod, tuna (only bumble bee tuna in the foil pouches, no soy), sometimes rice, and veggies. I do have a very boring diet, but--I don't have time to be sick, so I enjoy what I can have and try to make the best of it. Deb

Carriefaith Enthusiast
Carriefaith
Posted

I'm sorry to hear that you have all those food allergies. I have recipes on this thread that would be suitable for your diet. Many of the recipes can be altered for you diet as well. Open Original Shared Link

Also, broccoli, carrots, peppers, onions, and other vegetables taste great in a stir fry with olive oil and some spices such as cloves, ginger, garlic, basil, ect.

GlutenFreeAl Contributor
GlutenFreeAl
Posted

My diet is not as restricted as yours but for a variety of reasons I eat primarily fruits and veggies. When I get super hungry (which happens often when all you eat is fruit!) I'll eat some avocado, some peanut butter, or some almonds, all of which contain good healthy fats.

Can you eat rice? A hot rice-based cereal with fruit and nuts in it would be nice and filling too.

Or a big ol' baked potato with salsa and/or veggies is always good.

Good luck!!

jenvan Collaborator
jenvan
Posted

That stinks girl! Glad you are okay though... I also rec the whole foods route suggested here. But as far as packaged type foods.... You probably already know this but all of enjoylife's and namaste's products are free of all the foods you listed. Namaste's blondies are great--esp with chocolate chips :) (enjoylifes are safe for you) other snacks for me you could have, peanut butter/apple, perky's nutty rice cereal (would be okay for you) with pacific rice milk-cf/gluten-free/sf etc. Sorbets could make a good dessert vs. ice cream. One of my most favorite foods though is Ian's chicken sausages--most are gluten-free--but a few aren't. I can tell you which aren't. Alexia fries might be a good snack. Some of Annie's dressing are free of soy, gluten, dairy etc and you could have ie. Lowfat Raspberry and Tuscan Italian. Seeds of Change also have some good dressings that would probably work for you. I do miss cheese, so in certain dishes I load up on good spices to replace flavor that cheese might have added. These were some random suggestions but hopefully one will interest you!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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