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So, What Can I Eat ?

LilyCeliac

By LilyCeliac
in Coping with Celiac Disease

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LilyCeliac Rookie
LilyCeliac
Posted

I think it has been two years now that I have been diagnosed with Celiac Disease and on the gluten free diet. I have found that Doctors and Dieticians and even GI Specialists have become pretty useless at this point and the only useful information I get is from this Forum.

After two years of being Gluten Free I am still feeling crappy. I go to the bathroom alot and I always need to go urgently. I don't think I need to tell you all how annoying this is and how much it interferes with my every day life. I am scared to go anywhere that wont have a bathroom nearby and I am embarrassed to go to someone

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RiceGuy Collaborator
RiceGuy
Posted

Well, many of the top allergens are usually what people try cutting out first. Dairy, soy, corn, nuts, yeast, eggs, nightshades, etc. Some find they cannot eat legumes. For others, grains are a problem. It will vary greatly, so perhaps if you list some of the symptoms you're experiencing, others may be able to help you pin things down.

Generally speaking however, whole natural foods are best. Avoid processed foods. They usually aren't very healthy anyway. Whole veggies and fruits, nuts, seeds, bean, grains, plain meats, etc. I'm not sure what to recommend, not knowing how you are feeling.

You may also find some digestive enzymes to be very beneficial. Also, betaine HCL w/pepsin seems to work for those experiencing poor digestion, when the stomach isn't producing sufficient amounts of hydrochloric acid. But always read labels carefully to avoid gluten and anything else you cannot consume.

I use Stevia in place of sugars. It is a natural extract, with zero sugars, zero carbs, zero calories, and zero on the glycemic index. Some like it, others do not. There are many different brands and formulations, so you may need to try a few before finding one you like. The pure extract powder is the one I prefer. However, it is intensely sweet, which often confuses people when they first try it, because it does not measure like sugar. It only takes a tiny bit.

ang1e0251 Contributor
ang1e0251
Posted

I think I would start out very systematically to identify the foods you really have a problem with. Why should you eliminate any food you only suspect? The way you can do this is with an elimination diet.

My friend's grandson is eating this way right now per the instructions from his allergist and pediatric gastroenterologist. This is how they do it for him. His mother has a list of suspect foods. The first is eggs. For two weeks he eats nothing containing eggs, they are on week one right now. After 2 weeks, they feed him eggs and see now he reacts that week. During this whole time she must journal all his food and medications and any reactions he has. After that they start on the next food which is nuts.

For you, starting with a very basic diet that you build from food by food might be the best way to go. There are many of these diets on the net to get you started. Then you add those foods one at a time and write down what you're eating and how you react.

You didn't mention if you eat dairy, if I eat dairy, I react the way you described.

Let us know how you are doing. I'm trying to identify some problem foods too so we're in the same boat!!

Greg56 Rookie
Greg56
Posted

I do just fine UNLESS I eat sweets of any kind, fats, more than a small amount, and a few other odds and ends such as apple juice, raisons, prunes and more.

Honey is taboo. I used to eat lots of it as I was a beekeeper by trade but not more. Ice cream is a guaranteed flush out of the system!

But I can eat all I want of most fresh vegetables, many fruits, potatoes, popcorn, corn bread, and others.

Large quantities of any food are no good for me. Lots of gas pain if not diarrhea. Small quantities of wholesome, gluten free foods work well with me, and although it may not be what I might desire to eat it is what one should eat in the first place, whether you need to or not.

Jestgar Rising Star
Jestgar
Posted
Well, many of the top allergens are usually what people try cutting out first. Dairy, soy, corn,

Start with these, and go from there. Probably in that order.

ranger Enthusiast
ranger
Posted
I think it has been two years now that I have been diagnosed with Celiac Disease and on the gluten free diet. I have found that Doctors and Dieticians and even GI Specialists have become pretty useless at this point and the only useful information I get is from this Forum.

After two years of being Gluten Free I am still feeling crappy. I go to the bathroom alot and I always need to go urgently. I don't think I need to tell you all how annoying this is and how much it interferes with my every day life. I am scared to go anywhere that wont have a bathroom nearby and I am embarrassed to go to someone

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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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