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So What Can I Eat?

llama3

By llama3
in Coping with Celiac Disease

Recommended Posts

llama3 Apprentice
llama3
Posted

I just need to vent a bit. I've been gluten free for a few months now and keeping a food journal and I keep finding more and more foods that I can't eat! The latest is I discovered that chickpeas are absolutely out - they make me really really sick. They were becoming a staple for me. Well, not anymore. It's getting to a point where I'm wondering what on earth I CAN eat. Leafy vegetables and fruits seem to be OK, and meat, I think, but I'm honestly not sure about anything else.

I haven't been eating a ton of the specialty products or anything, but when occasionally I try them for a treat, oh, guess what - there is something in there that makes me sick, too. So not only do I have to walk past most of the things in the grocery store knowing I can't eat them, or not sure if I can, but I walk past the section with the big "Gluten Free!" sign and I know I can't eat any of that either.

I hate food. I hate thinking about food. I want food to go away forever and leave me alone.

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burdee Enthusiast
burdee
Posted

I just need to vent a bit. I've been gluten free for a few months now and keeping a food journal and I keep finding more and more foods that I can't eat! The latest is I discovered that chickpeas are absolutely out - they make me really really sick. They were becoming a staple for me. Well, not anymore. It's getting to a point where I'm wondering what on earth I CAN eat. Leafy vegetables and fruits seem to be OK, and meat, I think, but I'm honestly not sure about anything else.

I haven't been eating a ton of the specialty products or anything, but when occasionally I try them for a treat, oh, guess what - there is something in there that makes me sick, too. So not only do I have to walk past most of the things in the grocery store knowing I can't eat them, or not sure if I can, but I walk past the section with the big "Gluten Free!" sign and I know I can't eat any of that either.

I hate food. I hate thinking about food. I want food to go away forever and leave me alone.

I don't do well with gluten free processed foods either, because I have allergies to most common ingredients (dairy, soy, eggs, cane sugar, vanilla and nutmeg), which are contained in most gluten free processed 'treats' and/or condiments. So I stick with naturally gluten free fresh vegs, fruits, meats, poultry, fish, legumes and nuts, as well as gluten free grains. Fortunately I finally found condiments free of my other allergies. There are only 1-2 frozen dairy/soy free desserts I can eat, one brand of soy/dairy free cheese, one brand of dairy/soy free buttery spread, but amazingly 2 brands of egg/soy free mayonnaise (after making my own mayonnaise for 5 years). There are no gluten free packaged cookies or pastries or even mixes for cakes, cookies, etc. that don't contain my other allergens. I was fortunate to find 1 pancake mixe that is free of my other allergens. However, I have 2 safe bread varieties (from Ener-g) which I enjoy. Also I have 2 great baking cookbooks which exclude 5 of my 7 allergies.

Nevertheless, I focuss on finding or making safe substitutes for any foods I can't buy. I also focus on healthy 'whole' foods, rather than processed/packaged foods, because those contain my allergens.

If you're really worried that you might have other allergens, consider getting an ELISA (blood) test for IgG and IgA (delayed reaction) allergies, as well as more immediate reaction (IgE) allergies. If I hadn't gotten my other allergens diagnosed within 2 years after my celiac disease dx, I'd probably still be wondering what's causing my constant reaction symptoms. Guessing what foods bothered me may have made me afraid to eat anything after awhile.

cahill Collaborator
cahill
Posted

I just need to vent a bit. I've been gluten free for a few months now and keeping a food journal and I keep finding more and more foods that I can't eat! The latest is I discovered that chickpeas are absolutely out - they make me really really sick. They were becoming a staple for me. Well, not anymore. It's getting to a point where I'm wondering what on earth I CAN eat. Leafy vegetables and fruits seem to be OK, and meat, I think, but I'm honestly not sure about anything else.

I haven't been eating a ton of the specialty products or anything, but when occasionally I try them for a treat, oh, guess what - there is something in there that makes me sick, too. So not only do I have to walk past most of the things in the grocery store knowing I can't eat them, or not sure if I can, but I walk past the section with the big "Gluten Free!" sign and I know I can't eat any of that either.

I hate food. I hate thinking about food. I want food to go away forever and leave me alone.

I have been there and honestly it SUCKS!!!! I know that and I agree.!!!!

I discovered sooooooo many intolerances in addition to being celiac,, there was a period of time where about the only thing I could eat was ground lamb and white rice.

But it got better. I got better. My gut began to heal and slowly , very slowly , I have been able to add back foods.

There are foods ( in addition to gluten and soy) that I still can not tolerate but the list is soooooooooooooo much shorter than it was.

Hang in there , it is a long hard road, with A LOT of ups and downs, but it does get better.Your physical and mental health are worth it !!!!

eatmeat4good Enthusiast
eatmeat4good
Posted

Meat, vegetables and some minimal fruits is all I know that is really safe for me too. Lentils and garbanzo beans were absolutely terrible. Lectins? Who knows. I get sick from gluten free stuff too. It is maddening. I want to eat eggs again...but I can't. Dairy I can live without. It's really difficult but if I'm strict I am well. It's when I cave to cravings that I suffer. I wish I would just quit testing other foods and stick to the veggie and meat I know is right for me. Good Luck and I hope you heal soon.

llama3 Apprentice
llama3
Posted
  • Author

Thanks to all who have responded! It is nice just to know I am not alone ... not that I wish this on others!

Another small irritation today - the one trail mix (really just seeds and dried fruits) that I know I can eat without problems, my local store has just stopped carrying. Sigh. I know, there are larger problems in the world ...

If you're really worried that you might have other allergens, consider getting an ELISA (blood) test for IgG and IgA (delayed reaction) allergies, as well as more immediate reaction (IgE) allergies. If I hadn't gotten my other allergens diagnosed within 2 years after my celiac disease dx, I'd probably still be wondering what's causing my constant reaction symptoms. Guessing what foods bothered me may have made me afraid to eat anything after awhile.

I've been thinking of going to see an allergist and get tested for some things. Do they order such blood tests? I know they do scratch testing and that sort of thing. I'm reluctant to go back to my GP because she is unhelpful and already thinks I'm a hypochondriac, especially since I seem to be cursed with blood tests that ALWAYS come back negative (my gluten intolerance is self-diagnosed). Any advice on this would be helpful.

Takala Enthusiast
Takala
Posted

This "shakedown" phase is really exasperating. You have my sympathy, I have some ongoing issues with common ingredients to gluten free items made commercially, like flax, and I was also reacting to something I was using at home, I had to really go "back to basics" in November, but wow, subsequently, I actually lost weight over the holidays, :blink::DB) and my joints are better.

With legumes (beans) I have to drain the canned ones really well and rinse them. If dried, they would get a boiling water soak, a drain and a rinse, again. This gets rid of the starch which is so hard to digest, even for normal glutenoids. I can't taste bean flour as "odd" ( this is either a blessing or a curse, depending on one's attitude ;) ) but I might be starting to react to Bob's Red Mill products. I hope not, I really don't want to do an oat challenge, I've been avoiding them anyway, but there is a lot of the Bob stuff in storage, and that is a lot of bread I would have to make just for my spouse to use it up. I keep looking at my now so much better looking ankles in disbelief that I actually CAN just AVOID something things like processed lunchmeat with certain preservatives, and some types of gluten free grains, and the swelling finally went down. And I've been stuck with this for over 4 years.

So I just tried baking something tonight, it would be close to paleo, as I didn't use grain at all, but left out what I think is the latest culprit, so let's see what happens.

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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.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • 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 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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.
    • rei.b
      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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