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Feeling Frustrated

Jamieappleby

By Jamieappleby
in Coping with Celiac Disease

Recommended Posts

Jamieappleby Newbie
Jamieappleby
Posted

So I just started the gluten free diet a week ago and have made sure absolutely all of my food is gluten-free...the first three days were amazing, last few days I have been sick after every meal with the exception of breakfast which is always the same thing. I'm very careful not to cross contaminate, use my own toasted, etc. I did read posts about "leaky guts" and feeling sick for a while but I seem to be great until after I eat a meal and then I'm sick for the rest of the day or a few hours depending on what I eat. Did anyone else experience this when they first started? I'm so careful with everything I put in my mouth, but I'm not sure what's making me so sick or what gluten could be getting in. Any experiences or thoughts would be wonderful. Have a wonderful Christmas everyone!

Jamie

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psawyer Proficient
psawyer
Posted

Hi, Jamie, and welcome.

If you have damage to your villi caused by celiac disease, then it will take some time to heal. Until it does, you may experience symptoms after eating, even if the food is gluten-free. At one week in, you are just beginning the journey.

I had advanced damage, and while I felt better immediately, symptoms continued for a few months, gradually abating. My last bout of vomiting was about six weeks in--I have not done it since. That was more than ten years ago.

FooGirlsMom Rookie
FooGirlsMom
Posted

Hi Jamie,

I had the same issue only my honeymoon period lasted almost 2 weeks. I was riding high, thinking, oh wow, I feel almost normal. Then I got slammed. Secondary food allergies kicked in. Over the course of the last 6 weeks or so I've been experimenting with removing other foods from my diet. I found that I reacted very badly to soy & dairy. Then corn seemed to upset things. I am still working with that one because it seems to be intermittent. I have had some horrific reactions to "safe" foods. I did some reading and it's got to be related to the leaky gut issue we have with Celiac. One thing to be watchful for is overeating. I'm not sure why but some of us cannot get "stuffed" when we eat. Others have weakened abilities to process sugars, etc.

Just to give you an idea...I'm feeling best right now on a diet of meats, green veggies. Fruit seems ok if I eat it by iself.

Hang in there. The road back to health is sometimes paved with many challenges. I have had 2 meltdowns due to food frustrations since October.

FooGirlsMom

Jamieappleby Newbie
Jamieappleby
Posted
  • Author

Hi, Jamie, and welcome.

If you have damage to your villi caused by celiac disease, then it will take some time to heal. Until it does, you may experience symptoms after eating, even if the food is gluten-free. At one week in, you are just beginning the journey.

I had advanced damage, and while I felt better immediately, symptoms continued for a few months, gradually abating. My last bout of vomiting was about six weeks in--I have not done it since. That was more than ten years ago.

Thank you Peter!

Jamieappleby Newbie
Jamieappleby
Posted
  • Author

Thank you guys, I need to practice being more patient...it just felt too good being free or sickness for those first few days! Thank you again for the quick responses. : )

behappy123 Newbie
behappy123
Posted

Thank you guys, I need to practice being more patient...it just felt too good being free or sickness for those first few days! Thank you again for the quick responses. : )

Omg, I had the same experience. I am bad at dealing with this, because I already have a chronic illness and other problems. I have been puffy in my eyes and cheeks all week, and don't know what is causing it. I'm off gluten and dairy...

dilettantesteph Collaborator
dilettantesteph
Posted

I had the same experience and in my case it turned out to be an additional reaction to avenin in oats, and reaction to very low levels of gluten contamination. I had to eliminate most processed foods and I sort and wash my gluten free grains as well as most everything else. I also have to watch how I source my food very carefully.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Omg, I had the same experience. I am bad at dealing with this, because I already have a chronic illness and other problems. I have been puffy in my eyes and cheeks all week, and don't know what is causing it. I'm off gluten and dairy...

My puffy face and eyes seemed to be due to soy. Once I eliminated that I got much much better. Just a thought

behappy123 Newbie
behappy123
Posted

My puffy face and eyes seemed to be due to soy. Once I eliminated that I got much much better. Just a thought

hmm I'm not eating any soy and I have been only living off corn nuts, gluten free cereal, almond milk, gluten free bread, and turkey meat.

Skylark Collaborator
Skylark
Posted

hmm I'm not eating any soy and I have been only living off corn nuts, gluten free cereal, almond milk, gluten free bread, and turkey meat.

Gosh that's a lot of grains. Try shifting your diet towards a lot of fruit and vegetables and easing off all the grain products.

behappy123 Newbie
behappy123
Posted

Gosh that's a lot of grains. Try shifting your diet towards a lot of fruit and vegetables and easing off all the grain products.

Okay. Yah I need to add salads etc. I don't know what I am going to do once school starts again. What the heck am I going to take for lunch? I don't know how you guys do it!

Monklady123 Collaborator
Monklady123
Posted

Okay. Yah I need to add salads etc. I don't know what I am going to do once school starts again. What the heck am I going to take for lunch? I don't know how you guys do it!

Taking lunch is definitely a challenge in the beginning, but doable. Some ideas: (assuming no other food intolerances, and do you have a microwave at school?)

-- a big salad, with some sort of protein -- chicken, or ham.

-- hard boiled eggs

-- peanut butter and jelly on Udi's bread

-- leftovers from dinner

-- frozen entrees every once in awhile -- like Amy's Gluten-free mac and cheese.

-- hummos and chips/crackers

-- cheese, salami, crackers

-- yogurt

-- fruit

Just some off the top of my head. I tend to just take leftovers from dinner because I'm lazy. :P However, I do have access to a microwave so that makes it easy.

behappy123 Newbie
behappy123
Posted

Taking lunch is definitely a challenge in the beginning, but doable. Some ideas: (assuming no other food intolerances, and do you have a microwave at school?)

-- a big salad, with some sort of protein -- chicken, or ham.

-- hard boiled eggs

-- peanut butter and jelly on Udi's bread

-- leftovers from dinner

-- frozen entrees every once in awhile -- like Amy's Gluten-free mac and cheese.

-- hummos and chips/crackers

-- cheese, salami, crackers

-- yogurt

-- fruit

Just some off the top of my head. I tend to just take leftovers from dinner because I'm lazy. :P However, I do have access to a microwave so that makes it easy.

Yah that sounds good, I just can't have dairy or nuts or eggs so I need to think of more ideas. You guys are experts, I still don't even have a grasp of grocery shopping. I'm so lost as to what to eat. Plus gluten free stuff is so expensive, well at least where I live.

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    • 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.
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      High DGP-A with normal IGA

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      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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      High DGP-A with normal IGA

      By knitty kitty · Posted

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