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Sheesh, Why Am I Still Having Problems?

HappyCat22

Recommended Posts

brehm48 Newbie
brehm48
Posted

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
shift1313
Posted

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
celiac3270
Posted

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
brehm48
Posted

: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
shift1313
Posted

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
coin-op
Posted

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
Judithg
Posted
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
strack2004
Posted

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
Mark
Posted

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
strack2004
Posted

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
CoolCat1
Posted

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
kschmitz
Posted

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
Mark
Posted

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
Canadian Karen
Posted

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
strack2004
Posted

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
cojaro
Posted

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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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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