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I Still Feel So Horrible

heidi g.

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heidi g. Contributor
heidi g.
Posted

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
GFreeMO
Posted

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
heidi g.
Posted
  • Author

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

heidi g. Contributor
heidi g.
Posted
  • Author

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
GFreeMO
Posted

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
heidi g.
Posted
  • Author

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
heidi g.
Posted
  • Author
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
rosetapper23
Posted

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
heidi g.
Posted
  • Author

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 Contributor
Mari
Posted

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
heidi g.
Posted
  • Author

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
AVR1962
Posted

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
Celtic Queen
Posted

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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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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