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wcc84

My Horror Story

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I was diagnosed with Celiac about 4 years ago after almost 12 years of suffering un-diagnosed. My doctors had told me they thought I had the early stages of Crohn's for years. Everytime they did a endoscopy my results came back with severe,crohnic inflammation with loss of villi. I had never heard of Celiac until my doctor told me the pathologist looking at my biopsys said he thought I am Celiac.

So, 4 years later and no change what so ever . My diet is very strict and free of all gluten. My blood tests and my biopsy's have returned to normal ranges. The problam is I have not felt ANY difference in the way I feel. I still feel nauseus everyday ,stomach and intestinal cramps,pain and discompfort after having a b.m. I have not had a symtom free day in 16 years!The only change is now if I do get any gluten in my diet I vommit repetedly until my stomach is emty. I am sure I am not getting cross contamination from anything. And I was tested for other food alergies and have none. So why am I still having so much pain,discompfort and nausea? The only thing that gets me out of bed everyday is the pain meds my doctor has perscibed to help me with the symtoms.

I have read recently about canndita and bacterial overgrowth. I was treated with Flaygl for about 2 weeks to try to rid myself of bacterial overgrowth but there was no change after the treatment. Is there still a chance I have Canndita or bacterial overgroth and what would be the best way to rid my body of it? When I was diagnosed with celiac my doctor told me "stay on the diet and in a few months or so you will start to feel better". Well 4 years later and no change what so ever! I cant go on like this. I play this game everyday with the pain meds,trying to trick my body into feeling o.k. I want desperatly to get better. I would do anything to have 1 day where I dont feel sick. Please help.

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I'm sure you already covered all of this, but I figured I'd mention it just to be safe. Have you checked all of your personal care products (lotions, toothpaste, shampoo, soap, makeup, hairspray, etc.) for gluten? Are you using a toaster that's been used for gluten? Are you using any pots, pans, colanders, cutting boards, utensils, etc. that were used for gluten? Are all of your medications gluten free? Is anyone in your household eating gluten? These are all tricky places that gluten can hide.

Have you tried eliminating dairy, soy, or other major allergens/intolerances? It sounds as though you may have something else going on as well. Many Celiacs have other food intolerances. I believe dairy (casein) is the most common.

Have you been tested for Lyme Disease? Have you been tested for other chronic conditions such as colitis and Chron's?

That's a long time to be sick. I really hope you figure something out soon.


~Angie~

Gluten free since May 2004

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Have you tried a probiotic? I started them in Feb. of this year and have noticed a big improvement in the way I feel. Also, the advice about shampoo, toothpaste etc is a good one. Hope you start feeling better soon. L.A.


Best RX? Ice Cream!

Positive Blood Test 2000

Negative Biopsy 2000

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From experience with my son I know that gluten damage can affect digestive enzymes, let alone cause multiple deficiencies. He is about to have tests for pancreatic enzymes as he has a symptom of deficiency, I also know that he has low stomach acid and quite possibly some low liver enzymes.

You could maybe get some tests to check those? Or you could try a digestive supplement to seeif it makes any difference?

I also know that my son was found low in copper, which is a catalyst for numerous enzymatic processes in the body and I am slowly working through this and other deficiencies, hoping that I can restore at least some of his functions, knowing that sometimes gluten damage can be irreversible.

I am also using a gentle homeopatic remedy to stimulate various glands, but this would only work if there are no deficiencies.

just my take on this..

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I feel virtually the same as if I got glutened if I have any dairy. Casein intolerance (not to be confused with lactose, which is an enzyme needed to digest milk) is quite common.

I hope you can figure out what is bothering you soon. It is so frustrating to not know.


"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams

Currently gluten-, casein-, soy- and nightshade-free.

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What kind of pain meds are you taking? And antibiotics are really, really hard on my stomach.


Osteoporosis, and sacroiliac arthritis diagnosed 32 yrs of age.  Chronic low wbc, Severe constipation, Migraines, severe GERD, multiple miscarriages, Sjrogen's disease, positive ANA, thyroid nodules (hyperthryoid), fatty liver disease with elevated enzymes, low vitamin D, low protein, IBS, SIBO, Discoid lupus, mulitple food allergies and massive hair loss.  I left my career because I was too sick to keep working, and it was devastating because I couldn't apply for disability without a diagnosis.  My daughter was a preemie and she has Central Auditory Processing Disorder (CAPD) and had a positive ANA and Rheumatoid Factor at 16 and now has been dx'd with Hashimoto's.

 

Allergic to:  corn, rice, beans, tomatoes, dairy.  Not diagnosed as celiac.

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I have no problem tolerating dairy,soy,casien,etc. All my topical products I use are wheat free. I know when I get gluten in my body. I get very nauseus and start to vommit with in 20-30 minutes of ingesting it. But that never happened before I was gluten free. So I know there has to be another issue. As mentioned my blood work and biopsys have returned to normal so I know I dont have Crohns or colitis. I also get this constant preasure/pain in my bowels after the first b.m. of the day. There are times that it is so uncompfortable I dont know what to do with myself. Also............my meds are gluten free as well.

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I recently figured out that I have a problem with eggs. I was still getting diarrhea and stomach pain and gas. But when I got glutened, my symptoms were alot worse. Cutting back on eggs has helped me alot. I can only tolerate a few eggs that are baked into something. But I can't eat scrambled eggs or undercooked eggs (such as in a batter).

All the other suggestions above would be really good to check into.

good luck and keep us updated!

ptkds


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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I have no problem tolerating dairy,soy,casien,etc.

Have you ever tried eliminating these foods to see if there is any change in symptoms?? You may not notice any immediate symptoms right now if dairy is a problem and its something that you're consuming daily. Kind of like how your reaction to gluten wasnt so obvious until you went gluten-free.

I would not rely on allergy testing...you may not have a true allergy but you can definately still be intolerant.

You might consider trying that first. If you did have a problem with candida part of treating that problem is a strict diet...which eliminates most dairy, sugar, fermented foods, etc.

I would start with eliminating dairy and soy...and then go from there. If there is no change consider testing for possible infections. Candida is a yeast overgrowth which occurs when other things are not right in the body. If candida is a problem then theres a reason behind that.


Rachel

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Really consider the pain meds. Even without gluten, most pain meds (narcotic) make me very sick.

Fran

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Also keep a food diary including meds you take and put symptoms next to what you eat, it may just turn up something .Sorry if this has already been mentioned it's nearly 3.00am here am having a sleepless night lol


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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What I would suggest is to go on an elimination diet. If you eat only the few, rarely a problem foods for a couple weeks and still have problems, this would indicate it isn't an allergy or intolerance. If you get feeling better, then you would know it is some thing or things you've been ingesting and you just ( :rolleyes: ) have to slowly figure out what.

How were you tested for "food allergies" BTW? Testing for IgE mediated allergies will not find food intolerances.

One other thought -- I would look into anything you regularly use, toothpaste, gum, etc. There may be some ingredient you have a problem with. I know sugarless gum, due to the sugar alcohol used, gives me gastro problems, for instance.

How do you know you can tolerate certain foods? I thought I could tolerate soy but tested as intolerant. I eliminated soy and felt better.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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What a very. very long time to feel ill and how frustrating to not find answers. I hope that you will find some of the suggestions here to be of benefit.

I found this site when I first clued into the celiac connection, at the same time I found out that my sister had been diagnosed with celiac and since then I have also had brother diagnosed with celiac. This site helped with that diagnosis as we were ill at the same time, and to top it off I have another brother who was very ill at the same time and has gone gluten free and is seeing improvements.

I cut out gluten and saw a slight improvement but I continued to be ill, for nearly two years I felt as if I was a mouse caught in the talons of an eagle a year, the pain round my rib cage and into my abdomen often left me flat on my back. All is this just to say I know what it is to feel hopeless and I am so sorry to hear that you are in pain.

A food journal, and a great idea to include all medications and supplements within that, can be very helpful, I have found that noting not only my physical reactions but my emotional ones too has helped me see patterns. As an example, not only does dairy leave me bloated but it also leaves me feeling very mean and cranky and until I had been off dairy for a while I didn't know that.

I think the challenge when we get very ill is to find ways to tip ourselves toward health and then to stay committed to doing what tips towards health.

Here are a few things that I have found helpful:

-This site and particularly the OMG thread that is a thousand plus pages :) I am beyond grateful for the support I have received, just knowing that others have encountered the same stupidity made a big difference. More than that though it is finding a community to be normal in even if normal is horrendous misery. :ph34r::lol:

-A combination ulcer and baby food diet i.e. foods that were very gentle on my system

-Acupuncture

-Detox baths

-Salt/Vitamin C

-Most recently and clearly really significant is I quit smoking, I realize now cigarettes were keeping me nauseaus, in fact keeping me sick.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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The following is a letter I sent to a Candida expert to try to get his opinion. Not to knock anyones suggestions but I have been on elimination diets.Free of soy,dairy,corn,etc. Have kept a food journal several times with no clues to my problems.

About 4 years ago I was diagnosed with Celiac disease(gluten intolerence). I had been sick for over 14 years with gastro intestinal problems before I was diagnosed with celiac. My doctor told me I needed to eat gluten free and in a few months I would start to feel better. Well 4 years later and I still feel the same. My blood work and biopsys have returned to normal ranges and the inflamation in my gut is gone. But I still suffer daily from nausea,stomach cramps,pain and discompfort after a bowel movement,are my chief complaints. My only saving grace is the pain medication I have been perscribed for the past 12 years. Until I was given the pain meds I was on disability and unable to work for years. When my doctors exhausted their efforts looking for a solution they had mercy on me a tried to make me compfortable. The problem is now that my tests have returned to "NORMAL" they feel I should dis-continue the pain meds.The problem is that my symtoms have not changed at all since going gluten free. I know the pain meds are the only things keeping my head above water. With out them I would not be able to work and would have a very low quality of life.

I became ill when I was 21 years old..............I just turned 40 and have not been able to make any improvements in the way I feel in almost 20 years! Before I got sick I was as healthy as can be. As a young guy I was a nationaly ranked cyclist and was crowned World Champion at 16 years old as an amatur before turning pro at age 18. I never thought in a million years this is how I would end up. There were a few things that strike me as odd about the cadida conection in reference to my health. First off..............my mother(who I lived with at the time of onset) became ill with similar symtoms about 2 weeks after I did. She ended up with thrush but had many of the same symtoms as me(nausea,bowel discompfort). She too was tested for Celiac a few years ago and came back borderline(gluten sensitive). Then my girlfriend at the time frequently had yeast infections and eventully ended up being diagnosed with FiberMyalga. I have been tested for other food alergies and all have come back neg. I have been treated a couple times with Flagyl(antibiotic) a couple times to rule out bacterial overgrowth to no avail

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Another thing is I have had this scaly , itchly rash on one of my fingers for years. I showed it to my doctor and he said it is not D.H. He told me it is a fungal infection that I treat with a topical cream. It helps but it never goes away. For some reason I have always felt that this is connected to my stomach problems.

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It will be interesting to hear what the candida expert has to say.

I seem to recall a discussion about anti-biotics triggering candida and candida triggering gluten intolerance on the OMG thread a while back.

I've used Taheebo tea for candida and seen positive results but not definitive because I've also avoided sugar etc. at the same time.

I think you are correct to be curious about your mother's and your girlfriend's illnesses, it doesn't seem coincidental to me.

I hope you find some answers soon. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Have you been checked for a possible bowl obstruction or to see if your intestines are slightly twisted? It could by a partial obstruction. I have lupus and about 6 years ago (before I had an allergy to wheat) I would have similar symptoms. What had happened was that the lupus was attacking my intestines and it was causing them to slowly die. Thank God that I didn't have to have any removed. I would definantly have a CT scan or sonogram to make sure.

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Another thing is I have had this scaly , itchly rash on one of my fingers for years. I showed it to my doctor and he said it is not D.H. He told me it is a fungal infection that I treat with a topical cream. It helps but it never goes away. For some reason I have always felt that this is connected to my stomach problems.

I have this too! It gets worse when I wear rings, so I haven't been able to wear my wedding ring in 4 years. :( It used to be on one finger, now it's on 2 of them (different hands). My doctor calls it contact dermatitis, but the creams never help. I did notice that it got a lot worse when I did my gluten-test last week. That confirmed my theory that it's connected with my stomach problems. Maybe after a year of gluten-free it will clear up and I can wear rings again? Crossing fingers.

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What is the name of your pain meds?

Since you have been this way quite a long time, if I were you, I would try to do a juice fast. It will help you heal. Carrot juice is good for the stomach.

It helped me once. I also did an herbal wormer, as my daughter had worms, so I assumed I probably had them as well.

If you have something autoimmune going on the fast will most likely help. That is if the doctors can't help you and you've said they can't.


Osteoporosis, and sacroiliac arthritis diagnosed 32 yrs of age.  Chronic low wbc, Severe constipation, Migraines, severe GERD, multiple miscarriages, Sjrogen's disease, positive ANA, thyroid nodules (hyperthryoid), fatty liver disease with elevated enzymes, low vitamin D, low protein, IBS, SIBO, Discoid lupus, mulitple food allergies and massive hair loss.  I left my career because I was too sick to keep working, and it was devastating because I couldn't apply for disability without a diagnosis.  My daughter was a preemie and she has Central Auditory Processing Disorder (CAPD) and had a positive ANA and Rheumatoid Factor at 16 and now has been dx'd with Hashimoto's.

 

Allergic to:  corn, rice, beans, tomatoes, dairy.  Not diagnosed as celiac.

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The issue could be, what kind of allergy test did you have? A skin test will NOT be able to detect many food allergies. The skin test simply does not test for the correct antibodies. You need to get a blood test to test for food allergies.

If your allergist says a skin test will find your food allergies just fine, fire him, and get a younger doctor who knows about these things. My experience is most older doctors have no clue how to properly test for food allergies. I went to one of these older allergists, and he did the skin test. All food allergies were negative. I went and had a blood test done via my family doctor, and I was found to be moderately allergic to "wheat" (I assumed all gluten), oranges, and peanuts. Don't know where the peanuts came in, I never had any symptoms from them before, although if I eat too many almonds I get a headache.

I really don't understand why they use the skin for testing for food allergies. When you eat the allergen (food), you have the reaction in your gut, not on your skin.

Hope this helps you.

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I would go grain free. You might have a problems with all of them. Its also a good diet to treat the yeast over growth in your gut. There are many books out there that deal with pain caused by inflammation (also diseases like diabeties and heart diease, cancer, arthritis, etc), from eating grains and other carbs. I know several people who went on the atkins diet only to expirence alot of their pain went away.

The paleolithic diet is a lifestyle people adopt because they believe our bodies have a hard time digesting the lectins that grains have. They are anti nutrients inside the grain itself as a protection so that the grain won't spoil or be eatin by everything, to put it simple terms. Anyway there's alot of good information out there on it if you just google it, or the paleo diet.

I get the pain all across from one hip to the other when I eat a diet high in insoluable fiber. They say its good for you because it's like a brush that cleans the colon but for others like me it hurts to have that kind of abrasion. The fiber from vegetable is much better and easier to pass.

There are many good books on the inflammation syndrome and life without grains. It has helped me so much with the pain.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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Went to a new G.I. doctor this week and had some blood tests done and a ct scan. Ct scan was neg.,my celiac blood work was in normal ranges,,but I tested positive for Crohn's antibodies. I am very concerned. I have a endoscopy and colonoscopy sceduled for Tues. Anyone else tested positive for Crohn's antibodies that also have Celiac. All my endoscopy results from the past have been neg. for Crohns but positive for Celiac(before I was on a gluten free diet.

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The issue could be, what kind of allergy test did you have? A skin test will NOT be able to detect many food allergies. The skin test simply does not test for the correct antibodies. You need to get a blood test to test for food allergies.

If your allergist says a skin test will find your food allergies just fine, fire him, and get a younger doctor who knows about these things. My experience is most older doctors have no clue how to properly test for food allergies. I went to one of these older allergists, and he did the skin test. All food allergies were negative. I went and had a blood test done via my family doctor, and I was found to be moderately allergic to "wheat" (I assumed all gluten), oranges, and peanuts. Don't know where the peanuts came in, I never had any symptoms from them before, although if I eat too many almonds I get a headache.

I really don't understand why they use the skin for testing for food allergies. When you eat the allergen (food), you have the reaction in your gut, not on your skin.

Hope this helps you.

The skin test is a very accurate test for immediate IgE allergic reactions. Food allergies can show up on skin testing, my wheat allergy did, quite dramatically, I might add. Also, most anaphylatic reactions to foods will show up on skin tests. For environmental allergies, like pollen, skin testing is the most accurate way to be tested. Even if your reaction is completely internal, not hives on the skin. Allergy shots made from skin testing are usually very effective. This is why most older allergists are stuck on it. I have had the unfortunate experience of getting allergy shots based on blood tests, and they didn't help one iota.

Food allergies can be immediate or DELAYED reactions, Delayed reactions tend to be mainly a IgG reaction and less of IgE. If you have a delayed food allergy, it most likey won't show up in skin testing. So you're right, for delayed food allergy reactions, the blood test is better.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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