I'm Crushed Today!

[Simona19]

I just got back from my gastroenterologist. Las Tuesday I had endoscopy and the result is:

A. Small bowel mucosa with focal epithelial infiltration by lymphocytes. The villous architecture is preserved. No crypt hyperplasia identified. The findings are nonspecific and are associated with early celiac disease(marsh1 Correlation with clinical findings and serology is suggested.

B. Mild chronic gastritis. Giemsa stain for H. pylori is negative. No intestinal metaplasia identified. Alcian blue stain for intestinal type mucin is negative.

C. Esophageal cytology brushes: Negative for malignant cells. No Candida seen.

I have been on diet for over year. Not eating gluten (knowingly), not eating casein, watching everything everywhere and I still have the same thing? Last year I had mild gastritis- stomach inflammation and also Marsh1. This year I have the same thing.

Doctor told me that it looks like that I have the celiac disease (finally) and the dumping syndrome can be caused by it. He asked me, if I

[tarnalberry]

Benefiber is MADE from wheat. It is highly processed, and tests to less than 20ppm, but if you're having continued problems, you may be super sensitive, and I would avoid benefiber like the plague.

[Simona19]

Benefiber is MADE from wheat. It is highly processed, and tests to less than 20ppm, but if you're having continued problems, you may be super sensitive, and I would avoid benefiber like the plague.

Thank you for the warning. I didn't even look at the ingredients yet. His original fiber supplement was Citracal, but I told him that I have allergy to orange aroma, or flavor.

It looks that I'm very sensitive. But anyway, it should be better after all restrictions. Ach... I feel very down. I don't know why, but I do.

[cahill]

Do you have any problems with other intolerances ?? I believe cinnamon is in the nightshade family (??)

Are you getting CC from your pets food? Do you eat processed gluten free foods??

Could you be super sensitive to gluten??, maybe sticking to just whole foods for awhile would help.

I am sorry I hope you find the culprit soon.

[ravenwoodglass]

I told him that maybe I

[Simona19]

Do you have any problems with other intolerances ?? I believe cinnamon is in the nightshade family (??)

Are you getting CC from your pets food? Do you eat processed gluten free foods??

Could you be super sensitive to gluten??, maybe sticking to just whole foods for awhile would help.

I am sorry I hope you find the culprit soon.

I have fructose intolerance and 5 major allergies. I don't have any pets. Sometimes I will eat processed gluten free foods. They are: Glutino pretzels, Shar bread sticks, crackers,and pasta and twice rolls; Udi's bread, bagel- all types; Sweet dream chocolate, Glutino breakfast bars, Enjoy life bars; Pirate's booty; Lays potato chips; Sometimes I will have Amy's macaroni and cheese and Amy's pasta with tomato sauce and peas- ones a month; Marry me ice cream bars, So delicious yogurt, ice cream, Earth balance margarine, Glutino pizza- only 3 times in past year; West soy rice milk, or Trade's Joe rice milk, Chex cinnamon cereal and Purely decadent ice cream. I'm also using Bob's bread mix, ZenSoy pudding and Hot-dogs.

I will cook my dinner everyday from scratch. I don't eat in any restaurant, but I cook for other gluten eathers in house. I didn't changed every pot. I got three separe pots, but sometimes I'm forced to use pot where I cooked gluten things. I will scrab the pot twice before I will cook in it.

I will eat chicken, pork, beef, rice, potato, fresh cucumber, tomato, carrot, radish, letuce, onion, or cooked vegetable like broccoli, carrot, corn, parsnip, celery, kohlarabi, brussel sprots, spinach and fruit like orange, peach, apricot and berries. Maybe every 2-3 weeks I will eat pasta. I'm also eating Shoprite imported ham, Black bear hard salami, Dry Hungarian kolbasy, and sometimes Applegate turkey.

I will check all my pills again, all my shampoos and creams.

Thank you for suggestions.

[Simona19]

Please do check any pills you take with the maker. If it is a script the pharmacey can give you the makers name if it isn't on your bottle. If you take any generics do have them checked at each refill as they can change binders at will. For any supplements do read the whole label as supplements can say gluten-free but still have wheat and barley grass and you don't want those. Some of us are sensitive to distilled gluten grain alcohol so if you do drink at all you may want to make it something that isn't gluten grain derived. You may want to go with as much whole unprocessed food as you can and if you use toiletries with gluten ingredients like shampoos and such you may want to find some that are gluten-free. Also something that is not always thought of is that if you have a significant other who eats gluten you do need to ask them to brush their teeth before kissing.

I do hope you figure out what is CCing you soon and that you are soon feeling much better.

I never checked my medicine in each refill. I'm taking Nexium, Alavert for allergies, Nature Made multivitamin with iron, Mag-o-nite- magnesium supplement, Nature Made vitamin D, Tylenol rapid release -blue and red pill, I was taking Creon and two medicines from my country- Pancreolan- digestive enzymes and Quarelin- without coating, for migraines. I also had Tums and Gas-X tablets, not chewables.

And a few times I ate Advil, braun pill.

I don't drink alcohol at all. I drunk twice about 1/4 cup of Redbirch gluten free bear. I had swollen brain when I was 19 years old and any alcohol will give me a very strong headache. For the past year I drank only water and about 2 botles of Gatorade and l box of orange juice.

My husband was eating gluten things. He was was kissing me, but only with closed mouth- very quick. When we had some more action, he washed his mouth and used Listerine.

Only thing that I can think off in this minute is that I have been using regular flour in kithen when baking or coking for others. Maybe I was breathing it and got it into my mouth. I don't know. I'm thinking about the way what I was eating, or how I was contaminating myself all day long.

Can something else cause inflamed stomach and intestines except gluten?

[GlutenFreeManna]

My husband was eating gluten things. He was was kissing me, but only with closed mouth- very quick. When we had some more action, he washed his mouth and used Listerine.

Only thing that I can think off in this minute is that I have been using regular flour in kithen when baking or coking for others. Maybe I was breathing it and got it into my mouth. I don't know. I'm thinking about the way what I was eating, or how I was contaminating myself all day long.

Can something else cause inflamed stomach and intestines except gluten?

If you have been using flour in your kitchen that is a HUGE problem!!! Flour will stay in the air for up to 4 hours so that you breath it in. Then it settles on everything. Even if you baked while wearing a mask over your nose and mouth and gloves on your hands your kitchen would not be a safe place to make gluten-free food after you have baked. Your utensils and anything out or in an open drawer or cabinet will have a fine layer of flour dust on them. Your spices are very likely contminated as well--especially any you use in baking. That may explain your problem with cinnamon. And your sugar and bakign powder, etc, etc.

That and some of your medicines could be enough to keep that damage active. Also, even a quick kiss on the lips from my husband will gluten me. It does not have to be a deep kiss at all. If your home is not gltuen free there will be many other ways in which you could be getting cross contamination. Do you share a toaster with your gluten eatign husband? Are you using old scratched non-stick cookware used for gluten previously? Do you have a dedicated strainer for the pasta and gluten free dedicated wooden spoons and cutting board? Do you share condiments (mayo, mustard, relish, peanut butter, jelly) with your husband?

[T.H.]

Can something else cause inflamed stomach and intestines except gluten?

According to my gastro, yes...and I have another possibility I'll put at the end, too.

Based on his experience with his celiac patients (he's the one all the celiacs in town tend to go to), he told me this (and also said that he hasn't seen it studied, just in his experience).

- his celiacs were more sensitive to artificial dyes, colors, pesticides, and preservatives.

- his celiacs were more sensitive to genetically modified foods (if any corn or soy based ingredient doesn't say the corn or soy is organic, or non-GMO, it's almost always genetically modified)

- his celiacs were more prone to food allergies, intolerances, and sensitivities.

All of these are things he has his celiac patients tested for, or go off of, because according to him, they can impeded healing and can keep the body inflamed, too.

That said - has you ever considered that you might be oat intolerant? About 10-15% of celiacs react to oats - even gluten free ones - pretty much like we do to wheat, rye and barley. However, most gluten free products do NOT treat gluten free oats like they treat wheat, so the gluten-free food can still make oat sensitive celiacs ill. Bob's Red mill products are ones that don't work for many oat sensitive celiacs I know (Lundberg rice, too - they use oats as a cover crop).

If a gluten-free food is certified gluten free by the CSA, however, then they treat all oats like they are wheat, and have cross-contamination prevention procedures in place.

Also, a lot of your processed foods are ones I would be wary of just as a regular celiac. Might be worth dropping for a while and seeing how you feel, at least. Although I didn't ask - have you FELT like you were healing, or have you noticed that you weren't feeling all that great?

[Simona19]

If you have been using flour in your kitchen that is a HUGE problem!!! Flour will stay in the air for up to 4 hours so that you breath it in. Then it settles on everything. Even if you baked while wearing a mask over your nose and mouth and gloves on your hands your kitchen would not be a safe place to make gluten-free food after you have baked. Your utensils and anything out or in an open drawer or cabinet will have a fine layer of flour dust on them. Your spices are very likely contminated as well--especially any you use in baking. That may explain your problem with cinnamon. And your sugar and bakign powder, etc, etc.

That and some of your medicines could be enough to keep that damage active. Also, even a quick kiss on the lips from my husband will gluten me. It does not have to be a deep kiss at all. If your home is not gltuen free there will be many other ways in which you could be getting cross contamination. Do you share a toaster with your gluten eatign husband? Are you using old scratched non-stick cookware used for gluten previously? Do you have a dedicated strainer for the pasta and gluten free dedicated wooden spoons and cutting board? Do you share condiments (mayo, mustard, relish, peanut butter, jelly) with your husband?

I never had gloves on my hands when I was handling flour. I had mask on only if I have been making pirogues, backing big birthday cake. When I used flour for making crepes, or pork chops, I never used any mask. If I was cooking or baking, I baked mine first and then other things. But then I have been eating in the kitchen my food. It looks like with the flour dust as final ingredient. :(

When baking something I always used a new bag of sugar, my own baking powder, and other things. I was very careful about this.

I had many quick kisses from my husband. Specially when I felt very bad, he felt sory for me and tried to cheer me up.

I bought small toaster where you stick bagels inside for gluten-free eaters. But I have been using regular toaster oven for heating pizza or Dr. Prager fish sticks. I used new aluminum foil on bottom, but I never covered food. I thought it should be ok this way. I do have dedicated strainer for pasta and rice, also wooden spoons and cutting board, but again, I have used a few times cutting board where I maybe cut gluten things (its very small cutting board that we are using for vegetables, but its possible that somebody was cutting something with gluten on it before). I don't use the ones that I know that have been used only for bread, or cakes. I scraped them before very good, but I'm not sure, if this one was used only for vegetables.

I don't share condiments. If I will use jelly (ones per 3 months), I will always take a new bottle. something like mustard, ketchup I'm using in squeezable bottles. We don't eat hot-dogs with buns. My son is vegetarian and he doesn't eat meat at all, no hamburger for him. I would squeeze ketchup for the rest of the house myself and I don't touch anything. No relish or peanut butter in the house. I have allergy to milk and I don't eat butter, cream cheese, or any milk products that can be contaminated. I think this is out.

I already wrote about this, but I will repeat it again. Because of me I tested my son. He came very little positive on blood work and in his genetic test, as I understood it came from father(I can be wrong), came out that he has all DQ2. Because of him, I tested my husband and his blood results were very high. His doctor told him that he doesn't even have to have upper endoscopy and he should go right on the diet. Now, he is 2 months on gluten free diet, but he still eats milk.

I was little be skeptic about the all airborne thing and I didn't think that you need to be so strict. I washed my hands like trillion time each time I handled something with gluten or milk, or nuts. My second endoscopy is the prove of my wrong doing. Ach... I need to be more careful the next time.

[Simona19]

According to my gastro, yes...and I have another possibility I'll put at the end, too.

Based on his experience with his celiac patients (he's the one all the celiacs in town tend to go to), he told me this (and also said that he hasn't seen it studied, just in his experience).

- his celiacs were more sensitive to artificial dyes, colors, pesticides, and preservatives.

- his celiacs were more sensitive to genetically modified foods (if any corn or soy based ingredient doesn't say the corn or soy is organic, or non-GMO, it's almost always genetically modified)

- his celiacs were more prone to food allergies, intolerances, and sensitivities.

All of these are things he has his celiac patients tested for, or go off of, because according to him, they can impeded healing and can keep the body inflamed, too.

That said - has you ever considered that you might be oat intolerant? About 10-15% of celiacs react to oats - even gluten free ones - pretty much like we do to wheat, rye and barley. However, most gluten free products do NOT treat gluten free oats like they treat wheat, so the gluten-free food can still make oat sensitive celiacs ill. Bob's Red mill products are ones that don't work for many oat sensitive celiacs I know (Lundberg rice, too - they use oats as a cover crop).

If a gluten-free food is certified gluten free by the CSA, however, then they treat all oats like they are wheat, and have cross-contamination prevention procedures in place.

Also, a lot of your processed foods are ones I would be wary of just as a regular celiac. Might be worth dropping for a while and seeing how you feel, at least. Although I didn't ask - have you FELT like you were healing, or have you noticed that you weren't feeling all that great?

I can be sensitive to pesticides and preservatives and dyes, also to GMO food because I haven

[GlutenFreeManna]

I never had gloves on my hands when I was handling flour. I had mask on only if I have been making pirogues, backing big birthday cake. When I used flour for making crepes, or pork chops, I never used any mask. If I was cooking or baking, I baked mine first and then other things. But then I have been eating in the kitchen my food. It looks like with the flour dust as final ingredient. :(

When baking something I always used a new bag of sugar, my own baking powder, and other things. I was very careful about this.

I had many quick kisses from my husband. Specially when I felt very bad, he felt sory for me and tried to cheer me up.

I bought small toaster where you stick bagels inside for gluten-free eaters. But I have been using regular toaster oven for heating pizza or Dr. Prager fish sticks. I used new aluminum foil on bottom, but I never covered food. I thought it should be ok this way. I do have dedicated strainer for pasta and rice, also wooden spoons and cutting board, but again, I have used a few times cutting board where I maybe cut gluten things (its very small cutting board that we are using for vegetables, but its possible that somebody was cutting something with gluten on it before). I don't use the ones that I know that have been used only for bread, or cakes. I scraped them before very good, but I'm not sure, if this one was used only for vegetables.

I don't share condiments. If I will use jelly (ones per 3 months), I will always take a new bottle. something like mustard, ketchup I'm using in squeezable bottles. We don't eat hot-dogs with buns. My son is vegetarian and he doesn't eat meat at all, no hamburger for him. I would squeeze ketchup for the rest of the house myself and I don't touch anything. No relish or peanut butter in the house. I have allergy to milk and I don't eat butter, cream cheese, or any milk products that can be contaminated. I think this is out.

I already wrote about this, but I will repeat it again. Because of me I tested my son. He came very little positive on blood work and in his genetic test, as I understood it came from father(I can be wrong), came out that he has all DQ2. Because of him, I tested my husband and his blood results were very high. His doctor told him that he doesn't even have to have upper endoscopy and he should go right on the diet. Now, he is 2 months on gluten free diet, but he still eats milk.

I was little be skeptic about the all airborne thing and I didn't think that you need to be so strict. I washed my hands like trillion time each time I handled something with gluten or milk, or nuts. My second endoscopy is the prove of my wrong doing. Ach... I need to be more careful the next time.

It has to be the flour keeping you sick. With your son and husband needing to be gluten-free as well you should really just make your whole house gluten free. You should not be handling gluten and especially not flour-based gltuen items. Sorry you're still having trouble but I really think because of that airbourne flour you have not been gluten free enough. Try making your kitchen all gluten-free (and also check meds and other things not yet checked) before you start thinking there is something else wrong. You may just be one of those "super sensitives". I am this way--I can not even enter a bakery where they make fresh bread without getting sick.

[T.H.]

If I have inflammation in stomach and intestine, should I take some antibiotics for it like with SIBO? After I took antibiotics for two weeks, I felt better. I felt fresh for wail.

What were you taking the antibiotics for? If taking them made you feel much better, than I would definitely pester the doctor to look into that! Especially if you felt better and then slowly started feeling worse again once you finished the drugs - that might indicate you killed off 'something' part way, and then it's been regaining strength as soon as you went off the antibiotics.

Were you ever tested for H. Pylori? It's a bacterial infection of the gut that is usually resistant to antibiotics so you have to take some major antibiotics to get rid of it. And that DEFINITELY can cause inflammation.

Also, for fructose intolerance - how was that diagnosed? Have you ever looked at fructose malabsorption instead? That also has very similar symptoms, to some of the same foods, but there are a few extra issues with OTHER foods (like beans and some veggies and grains) that are really tricky to figure out without help. Which usually ends up as help on-line, because it's relatively new to the medical scene so many doctors don't know much about it, even if they've ever heard of it.

'fructmal diet' is a good search term for information on this in . Also FODMAP, which is one of the 'weird' issues with this condition.

Here's a blog from a gal who suffered from this - she mentions her symptoms, so she might be good to look at to see if anything is similar.

Open Original Shared Link

Hoping that you can figure this out soon, hon!

[Simona19]

What were you taking the antibiotics for? If taking them made you feel much better, than I would definitely pester the doctor to look into that! Especially if you felt better and then slowly started feeling worse again once you finished the drugs - that might indicate you killed off 'something' part way, and then it's been regaining strength as soon as you went off the antibiotics.

Were you ever tested for H. Pylori? It's a bacterial infection of the gut that is usually resistant to antibiotics so you have to take some major antibiotics to get rid of it. And that DEFINITELY can cause inflammation.

Also, for fructose intolerance - how was that diagnosed? Have you ever looked at fructose malabsorption instead? That also has very similar symptoms, to some of the same foods, but there are a few extra issues with OTHER foods (like beans and some veggies and grains) that are really tricky to figure out without help. Which usually ends up as help on-line, because it's relatively new to the medical scene so many doctors don't know much about it, even if they've ever heard of it.

'fructmal diet' is a good search term for information on this in . Also FODMAP, which is one of the 'weird' issues with this condition.

Here's a blog from a gal who suffered from this - she mentions her symptoms, so she might be good to look at to see if anything is similar.

Open Original Shared Link

Hoping that you can figure this out soon, hon!

I was taking antibiotics for SIBO. After that I felt ok for wail. I had dumping syndrome, but I was ok. What is causing SIBO? What bacteria is associated with SIBO? Can that thing be back?

The doctor Tennyson at Columbia wanted me to take the second round of antibiotics 4 months later just in case. But I didn