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Sheesh, Why Am I Still Having Problems?


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40 replies to this topic

#16 strack2004

 
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Posted 27 August 2004 - 12:39 PM

Hi! I am relatively new to celiac discussions here. I have not been diagnosed with celiac but have had digestive problems for at least 70 of my 76 years. I decided to go with the SCD diet outlined on htt colon slash slash www.breakingthrough the vicious cycle.info slash. I had to spell out the words for the punctuation there as \i am using a Spanish typewriter at the library and don't know the location of punctuation marks. This is quite a tough diet to follow. I've only been on it for about a month , almost 5 weeks, actually. I did eat some non gluten-free foods last week when I had company/. Am back on track this week, but suffereing the ill effects from last week which makes me think I may be on the right track. Although I did eat some foods that are gluten-free but foods I never did tolerate well like corn and tomatoes. Won't do that again. \I decided that I don't have so much time to get over this and feel well as you younger ones probably do. I just received an email from one of my daughters. It is addressed to people who have Crohn's Disease. \It seems to me that I have read that people with Celiac are more prone to Crohn's. At any rate, my daughter sent a post from a site called Health_and_Healing@yahoogroups.com. This is from a haroldzylber and concerns alternative treatments, especially enzymes , probiotics, etc. There is quite alot of interesting informations here, I thought. Looks like the full site identification is http colon slash slashgroups.yahoo.com.slashHealth_and_Healingslash. I haven't tried to get to it, so just hope I put it down right. Cheers, Ruth
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#17 Judithg

 
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Posted 28 August 2004 - 08:41 AM

I've had a lot of problems related to bacterial overgrowth. In fact, I went on a regimen of antibiotics (Cipro) and probiotics for a week, followed by daily use of probiotics. This seems to have helped a lot. At the very least, take the probiotics--can't hurt.
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#18 Mark

 
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Posted 28 August 2004 - 05:34 PM

Gillian502,
I've been gluten-free for one year as you, and my antibodies are still raised. They are going up and down, sometimes negative, then positive again. I am sure I have had no mistakes, so I cannot really explain it.
Also, my doc has been checking my blood for other food, and besides gluten & casein, a soy intolerance appeared six months ago, and I shoved some eggs antibodies recently.
But these tests are kind of special ones, I still have absolutely no allergy, when checked by standard allergy tests.

I just think about other possibilities: They harvested a wheat field a mile away from here, I wonder how far the dust can go? And also, does grass pollen contain gluten? I mean, grass is close relative to wheat - well, nobody eats grass, but one swallows a big part of what he/she breathes in.
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?

MARK
gluten-free/CF since September 03
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#19 tarnalberry

 
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Posted 28 August 2004 - 08:05 PM

mark, has your doctor said anything about the fact your symptoms disappeared on antibiotics? that seems strongly suggestive of a bacterial overgrowth, and is definitely worth further addressing.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#20 Mark

 
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Posted 29 August 2004 - 12:41 PM

It convinced her to run a series of tests for helicobacter infection, which finally turned out negative. But I have no idea what these tests can tell about other bugs. So I agree with you, and I'll keep nagging :rolleyes:

MARK
gluten-free/CF since September 03
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#21 brehm48

 
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Posted 02 September 2004 - 10:00 AM

I can relate! I have been wheat free for about two years and Gluten free for about one. When I first stopped eating wheat I felt a lot better, but after a while my symptoms relapsed. I started reading about Celiac's and became Gluten free. Initially my results were really good but after a while same thing Chronic Exhaustion. I then did the dietary challenge for corn, which I found that I could not eat either. I also noticed that if I consume a lot of dairy, I have problems. My reactions to corn is much different than to Gluten. When I eat corn I immediately feel tired and itchy. When I eat Gluten I usually get a stomach ache or no symptoms at all until the next day, when I am constipated. I have to eat psyhlum Husks everyday to maintain regularity. Maintaining regularity is very important because that is how we remove all the toxins from our bodies. I feel like it is a process and everyday you have to educate yourself a little more. Some days I wake up tired and other days I feel fine. I am currently under going testing for Celiac's. But I don't put my hopes too high in a diagnosis because whether the doctor says I have Celiac's or not, it won't change the symptoms that I experience when I consume certain foods, although it would be nice to know. The other thing is I don't think that I could eat gluten just to make a test come out positive. My body couldn't take it. I recently started seeing an allergist that is very understanding, but I don't know how knowledgeable he really is about Celiacís. He did prescribe me Doxepin 10mg which is an antidepressant. He prescribed it to me for anxiety and itching. I was having a lot of problems sleeping. He thought that it might help with my chronic exhaustion. I have been sleeping a lot better, but I still wake up extremely tired quite often. I think that only some one with Celiacís knows what I mean when I say extremely tired. You know the kind of feeling like you suddenly gained 200 pounds well you were sleeping, and you would rather sleep than do anything else. I have also found that exercise on a regular basis does help a lot, but do be careful of over doing it because it seems to me that the response that your body has when you ingest things that you can't digest is much like a cold or virus. If you over do it you will run down your immune system even more. The way I'm rambling on you would think I'm a hundred years old, but I'm only 26 with all of these health problems. Sorry my entry was so long, but I read a lot of your postings and I wanted you guys to get to know me. If anyone has any advice for me I would love to hear it, I'm always looking for ways to better educate myself in the matter of health. Thanks for reading Rebecca
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Rebecca
Sometimes I feel like conquering the world
Other times I want to stay in bed.
gluten-free Since Dec 2002
positive dietary challenge
still testing

#22 GEF

 
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Posted 02 September 2004 - 10:17 AM

Hello Rebecca and welcome to the forum!

I was just mentioning to my fiance last night that I'd be soooo healthy if it weren't for this intolerance issue. I'm 28 and know what it's like to be so young and feel soooo tired... it's just not normal for people our age to have no energy. I'm in the midst of a massive report here at work and it's a challenge keeping a focus on it... I'd go home and take a nap if I knew it would work! I wonder what works for fatigue... does the anti-depressant help you with that?

I'm considering doing a full panel intolerance test through York, just to see what other intolerances I might have.

Do you think that your relapse of symptoms could be due to a hidden ingestion? Are you certain that none of your meds have gluten?

Anyhow, I'm glad to meet you and I believe you'll enjoy it here.

Gretchen
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#23 brehm48

 
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Posted 02 September 2004 - 11:23 AM

Hi Gretchen, is nice to talk to someone who understands. About My meds I also take Alegra 180mg. I contacted both maufacturers and they both stated that their products are not made with any gluten, but that they are not tested to be gluten free, and that their supplier could change at anytime. I have only been on the Doxepin for about a month and the Alegra for about two months. I am very careful about cross contamination and reading food lables, it's quite an art. It's amazing the names that gluten can fall under: Such as natural flavorings, maltodextrin, vegetable protein. But it is very hard not ever get any. I think that I may have other food sensitivities but it is a very long process and the doctors seem to know less than we do. Also the city I live in is not that big, the closest place to go for real testing would probably be the Mayo Clinic in Arizona. That would be very time consuming and costly so it's kind of a last resort. But I try to stay postive, I'm glad that I don't have cancer or something like that, some people our age and younger do. Also my sister in law also has a lot of food sensitivties so we get together and cook a lot. Thanks for listening and nice to meet you.
Rebecca
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Rebecca
Sometimes I feel like conquering the world
Other times I want to stay in bed.
gluten-free Since Dec 2002
positive dietary challenge
still testing

#24 tarnalberry

 
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Posted 02 September 2004 - 02:14 PM

Gretchen, despite doing the elimination diet, I'm considering going the York labs route as well. I'm a little concerned that IgG testing still hasn't been scientifically validated, not to mention the $350 price tag... Let us know if you go through with it!
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#25 Mary

 
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Posted 02 September 2004 - 06:00 PM

Hi folks, I am really new to this problem and haven't even gotten a firm dignosis am currently waiting for blood test to return. I have had a lot of improvement since I have gotten off all gluten :rolleyes: At least I think I have. I had a small break through this morning that was loose but it has been pretty good other than that. I just keep catching myself making mistakes. I read lables but forget all the thing that I should be looking for. I have to eat out a lot and that is a problem at times. Anyone know of a good list of foods to avoid that have hidden gluten in it?
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#26 brehm48

 
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Posted 03 September 2004 - 02:11 PM

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
http://www.glutenfreeinfo.com/

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
http://www.eatrealfo.../forbidden.html
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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Rebecca
Sometimes I feel like conquering the world
Other times I want to stay in bed.
gluten-free Since Dec 2002
positive dietary challenge
still testing

#27 shift1313

 
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Posted 04 September 2004 - 01:59 PM

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
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#28 celiac3270

 
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Posted 04 September 2004 - 06:25 PM

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.
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#29 brehm48

 
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Posted 04 September 2004 - 07:13 PM

: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
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Rebecca
Sometimes I feel like conquering the world
Other times I want to stay in bed.
gluten-free Since Dec 2002
positive dietary challenge
still testing

#30 shift1313

 
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Posted 05 September 2004 - 05:32 AM

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.
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