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I Still Feel So Horrible


heidi g.

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heidi g. Contributor

i have been eating the gluten free diet. i was diagnosed in july and when they did a biopsy in my stomach/intestine (i had a endoscopy/colonoscopy) and he told me everything looked normal but when he got my biopsy result he told me i need to try a gluten free diet. my blood test came unresponsible to celiacs disease. i just dont understand where this came from i have been several traumatic life experiences so maybe it caused an allergy to gluten but what i dont get is when i first tried the diet i got really hungry and my stomach didnt feel so swollen and the gas wasnt so bad. then i ate subway and it messed up my progress :( so i had a swollen stomach once again and now i cant tolerate dairy products so i eat mostly rice. but i still have gas so bad i feel like i need to throw up or it hurts and cramps and i have to lay down. i need to find a job but im worried because i dont want to lose it due to i always feel like crap. i never know when my stomach is going to act up. i havent felt normal in.... dont even remember. is it normal to feel like crap for awhile when you first start it? do i have to eat light foods? no ulcers but i have gluten free ketchup and i made my own french fries with fresh potatoes but when i eat salt and the ketchup made my tummy burn and i had to drink pepto bismol. is it normal for stomach to be sensitive to foods and salt, etc? i have no ulcer so i dont know why it hurts like that. i just need some help and advice im freaking out all the time that its something serious and im going to die sometimes :( my doctor is no help he just diagnosed me and sent me on my way! help


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GFreeMO Proficient

I'm sorry that you are not feeling well. I have been at this for 2 years and the best advice that I can give you is to avoid all processed gluten free foods. Avoid dairy and soy. You may not have been sensitive to salt or ketchup but the oil that you used to make the fries.

Do you have a gluten free home? Maybe you are getting cross contamination from somewhere.

I would try to stick with just meat, veg and fruit for a few months and I bet you will feel better. Your own fries are a great idea. Just maybe try a different oil.

Hang in there!

heidi g. Contributor

and it was a subway salad i didnt eat the bread. i think it was the chicken :/

heidi g. Contributor

I'm sorry that you are not feeling well. I have been at this for 2 years and the best advice that I can give you is to avoid all processed gluten free foods. Avoid dairy and soy. You may not have been sensitive to salt or ketchup but the oil that you used to make the fries.

Do you have a gluten free home? Maybe you are getting cross contamination from somewhere.

I would try to stick with just meat, veg and fruit for a few months and I bet you will feel better. Your own fries are a great idea. Just maybe try a different oil.

Hang in there!

thanks but i didnt use any oil. i just cut them up like fries and baked them in the oven. :/

GFreeMO Proficient

How long ago did you have the subway? It can take a few weeks to get over being glutened. Subway isn't a gluten free friendly place. They touch bread all day. They grab the bread and grab lettuce with the same hands over and over. I would imagine that they hav e cross contamination issues.

heidi g. Contributor

i had it 3 weeks ago. i was doing fine and then i ate the salad and oh man i felt the bloating coming already. i think my stomach might be something similar to gastritis when i eat gluten foods. it gets all inflamed. what im wondering is does your stomach get inflamed for a little bit? maybe i have to wait awhile to eat salt, chocolate, oils again. maybe my stomach has to heal. but i have no idea. im still new to this and its very overwhelming sometimes

heidi g. Contributor
Open Original Shared Link this is the website i just read- it makes so much sense i got this after i took an antibiotic and had a bad reaction to it and thats when all my symptoms started

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rosetapper23 Explorer

Do you have any rashes? If so, you might have Dermatitis Herpetiformis, which a number of celiacs have. The reason why I mention this is that people who suffer from this type of rash are sensitive to iodine, which can be found in iodized salt, dairy, seafood, and asparagus. I become terribly ill from eating anything with iodine in it.

And I agree with the above poster that you should try to eat just meat, vegetables, and fruits for a while. Give up grains, soy, and dairy for now. Sometimes we have a problem with cross-reactivity where the immune system becomes confused and identifies other foods as having gluten in them, such as dairy and other grains (like rice).

heidi g. Contributor

hmmmmm that makes sense i havent had any major rashes but i do get dandruff for no reason and my scalp gets intensly itchy and a couple month ago i got this intense blotchy red patch on my face that was itching and was spreading down my neck when i itched it. and it was secreting a yellowish liquid. didnt look like anything i saw on google so i wasnt sure. i do get dry skin alot lately lately and i get itchy but i havent seen the sores like the ones i seen on google from the people who have it

Mari Enthusiast

I developed an allergy to hot peppers several years before being diagnosed with celiac disease. Then I read that this is a fairly common allergy for Celiacs. Even ketchup gives me a reaction. Allergies to wheat and related grains is also common with Celiacs as is cows milk allergy and lactose intolerance. Besides the rice you may be able to eat gluten-free buckwheat and gluten-free millet and most of us can eat gluten-free oats. You have been gluten free for only a short time and your problems with foods will decrease over time. I speeded up my recovery by using the Specific Carbohydrate Diet and tho recovery was slow I have been able to add quite a few foods to my diet.

Some of the people on this forum are very good at understanding laboratory and biopsy reports. You could get copies of these tests from your Dr and post them in a message. Be sure to put the normal range with your results. Not all Drs understand that a person needs to follow a gluten challange diet before the blood tests are taken.

heidi g. Contributor

oh i ate gluten before my blood tests. i had no idea that it could be a gluten allergy. i was eating sandwhiches and tons of canned soups. thats why im puzzled

AVR1962 Collaborator

You could very well be reacting to something else, considering your diet is clean. I can't have high fructose, guar gum or xanthun gum. All give me digestive issues and make my world spin for about 3 days. Many here can't have soy. Read labels, keep a journal and you shjould be able to figure out what is giving you issues. Salad dressings can have hidden dairy, even ones you wouldn't think should so that is a possibility with your slalad.

Celtic Queen Explorer

Some people have issues with nightshade vegetables - potatoes, tomatoes, eggplants and peppers. Since you were eating potatoes and tomatoes (ketchup) maybe you should avoid those for a while.

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      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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