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Sheesh, Why Am I Still Having Problems?


HappyCat22

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brehm48 Newbie

DO NOT USE wheat flour, wholemeal flour, oatmeal, rye flour, strong flour, semolina, barley flour, self raising flour, spelt flour, triticale, couscous.

DO NOT USE products made from these flours such as semolina.

DO NOT USE pastas such as spaghetti, macaroni, lasagne.

DO NOT USE products that are just labelled starch, food starch, edible starch or modified starch.

BEWARE of any products that may use starch as a filler such as mustard powder and white pepper.

BEWARE of any products that contain unspecified sweeteners and stabilisers. These may be chemically modified wheat flour.

I found this web site for you if you go into it you will find a list of a lot foods that are gluten free, just enter the site and click on food list on the upper left hand. Then you just select by the category

Open Original Shared Link

Forbidden List

For you with chronic complaints.........

Wheat, Abyssinian (Triticum duran), Einkorn Wheat

Alcohol (Spirits - Specific Types)

Artificial Color

Artificial Flavor

Baking Powder

Barley Grass (Barley Hordeum vulgare)

Barley Malt

Beer

Bleached Flour

Blue Cheese (made with bread)

Brand

Bread Flour

Brewer's Yeast

Brown Flour

Bulgar (bulgar wheat)

Calcium Caseinate (contains MSG)

Caramel Color

Cereal Binding

Chiton

Citric Acid

Coloring

Couscous

Dextrins

Edible Stach

Farina Graham

Filler

Flavoring

Food Starrch

Fu (dried wheat gluten)

Germ

Glutamate (free)

Graham Flour

Gravy Cubes

Groats (barley, whaet)

Ground Spices

Gum Base

Hard Wheat

Hydrolyzed Plant Protein (HPP)

Hydrolyzed Vegetable Protein (HVP)

Inulin

Kamut (Pasta Wheat)

Malt, Malt Extract, Malt Syrup, Malt Flavoring, Malt Vinegar

Miso

Matzo Semolina

Modified Food Starch

Modified Starch

Mono and Diglycerides

MSG

Mustard Powder

Natural Flavoring

Pasta

Pearl Barley

Rice Malt (contains koji)

Rye

Seitan

Semolina (Triticum)

Shoyu (soy sauce)

Spelt

Soba Noodles

Sodium Caseinate (contains MSG)

Spirits (specific types)

Sprouted wheat or barley

Starch

Stock Cubes

Suet in Packets

Tabbouleh

Teriyake Sauce

Textured Vegetable Protein (TVP)

Triticale

Udon noodles

Vegetable Starch

Vinegars (Specific types)

Vitamins

Wheat of any kind

Wheat starch

Wheat Grass

Open Original Shared Link

You must check out this web site I just found it is very insightful.

Here is a quote from it:

"Restaurant Reality

Restaurants are out of my reality now. That was a tough one to give up, because I had grown weary of cooking and had been eating out for a couple of years. Most of the Celiac groups will tell you to ask at a restaurant and take care of yourself that way, but how is that possible when my toast can't touch the toaster where the wheat toast was prepared? So what if I have grilled ahi tuna with no spices, if gluten was on the grill right before my food, then the gluten will rub off on my tuna."

If you just do a search on the net you can really find a lot of info, I hope this helps.


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shift1313 Newbie

Hello everyone, my name is matt, this is my first post here, im 23 and have been gluten free since feb. I was given a tip by a friend of a friend whos son has been gluten free for 6 years(i think hes 10) she said with every thing he drinks they add glutamine, you can find it at gnc or similar stores. its an amino acid suppliment that im told will help repair the intestinal lining. I have only been using it for a short time so I dont have any success story but my friends son after 3 years of being on it and a very strict diet had his intestines checked with no signs of damage!!!! Years before they were in horrible shape. Im not sure if anyone else here has used it but it is giving me hope. Ive been feeling horrible for about 3 years now so ill try anything to get back to my old self. :D

celiac3270 Collaborator

Welcome to the board, Matt! I would think, though, that after three years, one's intestines would be healed regardless of whether they drank this....especially, obviously, with a strictly gluten-free diet. The intestines start to heal within days of going gluten-free..........but just sort of on the surface.....eventually they heal completely, but it shouldn't take more than three years, anyway, I would think.

brehm48 Newbie

:rolleyes: Welcome Matt!

I'm a newbie to. I just wanted to tell you to keep up the good work of staying on your diet. Your gonna love this forum everybody here is really nice and has a lot of helpful information. I just joined a couple of days ago and I'm hooked. Thanks everybody

shift1313 Newbie

thanks for the welcomes. Im doing everything I can to stay gluten-free because i have really bad reactions. Also my wife is gluten intolerant so it makes things a bit easier. I just found that my local grocery store carries some gluten-free products like gluten free pantry mixes for 2.50, the health food store chargers $5!!. It makes it a bit easier.

coin-op Newbie

to answer the first post:

your diet is probably too complex, you have no idea what is causing the problems. Simplify it a bit so you can more closely track your cause and effects. Start cutting out things. I suggest keeping to simple foods like fruits and vegetables and whole grains - for you maybe just rice and corn. Start reading ingredients on EVERYTHING. You will be surprised at what you cannot eat.

-cass

Judithg Rookie
I am really concerned about the bacterial overgrowth too. I'm taking probiotics and it helps me somehow. Interestingly, I had to go on antibiotics last year, and my symptoms almost disappeared during that course. I wonder: has anyone of you had the same experience with antibiotics?

I just read this post about bacterial overgrowth and antibiotics. I had the same experience 3 times in the past year where my symptoms lessened or disappeared while on antibiotics (of course, I was not eating gluten before, during, or after the antibiotics--bad GI symptoms had developed despite my best efforts at avoiding gluten over the past few years). My GI doc has not been able to explain it. My alternative doc believes I have had an ongoing problem with bacterial overgrowth which has contributed to my various symptoms.


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strack2004 Rookie

I usually have experienced an improvement in my symptoms while taking antibiotics off and on over the years. It only lasts a couple of days after the course is finished, though. Probiotics over a long period of time may be the answer. I just discovered a new book at our library called "Sugars That Heal" by Emil I. Mondoa, M.D. and Mindy Kitei. It lists 8 sources of essential saccharides. Many of them are found in brns, aloe vera, shiitake and maitake mushrooms, . Much interesting information relating these substances to various disease conditions. Strack2004, Ruth S.

Mark Newbie

Yes, my improvement lasted about a week after my course was finished, and then it got even worse than before. It seems the bad bacteria can repopulate the place much faster than the good ones.

I'm just trying a few different probiotics to see which one works better for me. Up to now, they seem to calm down my irritated intestines.

Thank you for sharing your experience.

MARK

gluten-free/CF since September 03

strack2004 Rookie

Mark, Which probiotics do you use? CurrentlyI am using something called Procratin which contains protease, amylase, lipsase and one other enzyme. I do this at the library and don't have the bottle handy. Ruth S.

CoolCat1 Rookie

Canadian Karen, I had the gastroscopy, colonoscopy etc a couple of months ago and got diagnosed with celiac disease. The demoral they give you made me so relaxed. It's a fantastic drug. Don't worry. I love Demoral.

kschmitz Newbie

Hi,

I am also new to this forum and appreciate all your experienced advice. RE: eating out - a dietician I contacted suggested taking aluminum foil to resturants and asking the chef to grill meat/fish on the foil. Has anyone tried this?

ks

Mark Newbie

Ruth, the Procratin doesn't probably contain any living cells, but definitely can help you with insufficient pancreas. I've tried 5 Strain Dophilus from Swiss Herbal Remedies recently, and now I'm on Lepicol - funny stuff, looks more like a hay, but there is a lot of fiber in it which helps you to get some regularity into your digestion. I've just started, but it seems to work well.

MARK

gluten-free/CF since September 03

Canadian Karen Community Regular

Hi Cool Cat!

Thanks for the reassurance that Demoral will do the job, I am not looking forward to the colonoscopy in regards to the "discomfort", but I am anxious to get it over with to get some results...... I have it on September 28th......

Have a great day!

Karen

strack2004 Rookie

Mark, Where do you get the 5 strain dophilus or lepicol? Will check my health food store to see if the lady there carries either one. Thanks, Ruth

cojaro Newbie

check everything

i have my own toaster and pans and butter plate

and i make sure none of those come in contact with something that isnt gluten-free-free

its a bit troublesome, but its better than feeling sick all the time

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    • trents
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    • catnapt
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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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