Not Dealing Well...

[tahoedaniels]

I was misdaignosed by a doctor, he said I had IBS, for approximately 9 months ( he said everytime the pain got too much to stand, goto the ER, which turned out to be about 10 times in the year), finally ending up in the hospital for 6 days. Prior to ending up in the hospital, I started seeing another doctor who has actually started helping me. It is odd that if IBS is a diagnoses of exclusion, the doctor I was assigned in the hospital performed approx. 11 more tests for possibilities it could be. I have decided that if a doctor does not want to (or know to) test for other possibilities, they just throw you into the IBS category.

I have also since had my gallbladder removed and was very hopeful that I would be feeling much better by now...not happening.

I have been diagnosed with celiac disease for about a month.

I am still having a very hard time - and going through waves of being very depressed.

I have not enjoyed any type of food I have tried that is gluten-free.

Rice flour bread, Tapioca Bread, frozen pizzas, rice bowls, crackers and a variety of other foods that I got from Wild Oats Natural Foods. I am hoping that at some point I will have forgotten what good food tastes like, and I will be so hungry that anything will taste good...hasn't happened yet.

I have been staying away from anything that I don't know for sure is gluten-free...very hard. I actually read here that Heinz ketchup and French's mustard is gluten-free and am very happy to know that.

My friends are also having a very hard time really understanding what I am going thru and that makes it even harder. I'm tired of trying to explain and at the point that I don't care anymore if they understand. I will write more later...need a break.

[burdee]

I'm sorry to hear you also were put off with the IBS 'copout'. I was given that MISdiagnosis 10 years ago and finally diagnosed myself and went gluten-free 3 months ago. My husband says that should be 'IDK' or "I Don't Know", because that's really what doctors mean when they use that IBS label. However, I rather like 'IBS' because it stands for what my intestines feel like after I've ingested gluten ("I'm Being Squeezed"). I did get my Enterolab results earlier this month which told me I had antibodies to CASEIN (or cow's milk products) as well as gluten. So I'm now avoiding gluten, casein AND soy (which also seemed to give me symptoms). Nevertheless my symptoms of excruciating pain, bloating, cramping, and constipation have almost completely disappeared.

I went through many moments of discouragement, anger, hopelessness and confusion during the past few months. I had MANY accidental gluten ingestion 'slips'. Even after I eliminated the obvious gluten sources, I painfully learned about vitamins, toothpaste, envelopes and all the mystery ingredients which hide gluten. After scrupulous gluten sleuthing, I was still having symptoms. Thankfully E-lab results told me about casein. Then I found that soy was troublesome when I tried to substitute soy milk/yogurt/margarine products for dairy. But eliminating all three changed my symptoms from excruciating pain to occasional twinges and resolved most of the other symptoms.

What really helped me get through those 'depressing' times was empathy and information from other people. My very supportive husband got the brunt of my anger. I met a really empathetic but practical friend who leads my local celiac support group. She has been gluten-free for 12 years but hasn't forgotten initial difficulties. She patiently answered my questions and encouraged me, when I'd send her desperate, confused emails. Another friend whose husband is celiac initially gave me lots of information about mainstream gluten-free products. Posting on this message board introduced me to many other supportive, experienced people who answered my questions and encouraged me. Above all, prayer got me through those lonely moments of fear and self-doubts.

gluten-free substitutes for breads/cookies/pasta/cereals do NOT taste the same as their gluten containing counterparts. Luckily I LOVE heavy dense breads, so I love the darker, denser gluten-free breads. I even like the gumminess of xanthum or guar gum. But maybe that's psychological, because I feel so relieved when I taste gluten-free bread and KNOW it's not the gluten stuff, so it won't give me excruciating pain. But I did ask around and shop around before I bought gluten-free foods. I gave away ones I didn't like (or gave them to my human garbage disposal husband). There really is a large variety of gluten-free foods. Our local gluten-free bakery (Ener-G Foods) has breads that suit my preference for dense, dark, chewy breads and others' preference for 'Wonderbread' types. So shop around, ask other celiacs what they like, post questions on this website. People here LOVE to share info about foods.

At first I missed cold cereals, because I didn't like most gluten-free cereals. However, just when I finally found one I liked, I learned I can't have dairy, soy milks and don't like the other milk substitutes--so there's nothing to put ON the cereal. That made me look for other breakfast options. Yet I have learned during the past 3 months not to get too hooked on any 'favorite' foods, esp. when I realize that the foods I previously craved most (gluten and dairy foods) were the ones which damaged my body most. But that just helps me consider food something to satisfy hunger (and hopefully nourish, rather than destroy, my body), rather than use foods to satisfy emotional needs.

Nevertheless, I have learned there are SOOOO many other foods (meats, vegies, fruits, nuts, eggs, etc.) which are naturally gluten/casein/soy free. Fresh is best. Otherwise I have to decipher mystery ingredients on labels. Then I must rely on the CSA product guide book, the ClanThompson website lists, mainstream gluten-free food lists on this website and even the GFCFDIET website lists of 'unacceptable gluten and/or casein ingredients' to avoid.

I really didn't tell most non-celiac friends until I had the gluten-free thing kinda figured out. Also I didn't tell them I self-diagnosed after getting the 'IBS' runaround for 10 years. I just told them I 'learned' I had celiac--I didn't say how. I just told them how much better I was doing after eliminating gluten. After my E-lab test results arrived, I told them my test results indicated gluten/casein intolerance and celiac gene. I guess I was trying to avoid the 'are you sure you know what you have?', 'have you tried the ______ diet?' or 'has your doctor diagnosed that?' kinds of questions. Meanwhile I talked to many celiac friends or emailed other friends who trust my judgment.

So reach out to other celiacs, post your questions, frustrations, etc. on this board, find a local celiac support group. Focus your energy on gluten sleuthing. I found the learning curve for understanding what contains gluten EXTREMELY STEEP at first. Learn everything you can about where gluten lurks. Print out definitions of 'mystery ingredients'. (Just when I got the gluten thing down, I had to do that with casein and then soy.) Do whatever you can to take care of YOU, to avoid whatever foods cause your symptoms. Aim your efforts at becoming symptom free. My local celiac support group leader always told me, "If you're still in pain, you're still consuming gluten." She was only partially correct--neither of us realized I had problems with casein and soy initially. When I learned about casein, I could distinguish those symptoms from gluten, and then from soy symptoms. Listen to your body--it can teach you a lot about what it needs.

Good luck and keep posting.

BURDEE

[tarnalberry]

I responded on the other thread you posted on with some gluten-free food ideas that shouldn't taste disgusting. ;-)

[angel-jd1]

One of the doctors at the National Institue of Health Conference on Celiac Disease last month said that to him an IBS diagnosis means "I Be Stumped"! ha I had to laugh at that one. SOOOO TRUE!! And it even came out of the mouth of a doctor!!

-Jessica

[Guest TESTinME]

One of the doctors at the National Institue of Health Conference on Celiac Disease last month said that to him an IBS diagnosis means "I Be Stumped"! ha I had to laugh at that one. SOOOO TRUE!! And it even came out of the mouth of a doctor!!

This is hilarious and so true. My DR told me I had IBS as well and just to live with it. I figured out on my own that if I avoided gluten, my symptoms went away....

[vegasvic]

Hello all

I was responding to this thread-I was told IBS too-later had my gallbladder out but it didn;t do any good- now I did the Entrolab test and it came back positive for wheat and milk allergy..

I guess my question to all is does anyone have lower right sided pain? I have it when I walk too much, eat too much etc. it is very uncomfortable and I thought it would go away after gall bladder surgery and then after i tried the new diet but it's not...

I went to a gyno and she said she doubts it's female related. I also feel sometimes like I haven't completed going to the bathroom-so I go a little bit here and there which is time consuming whe you're out and about!! I was going through the internet and found these two interesting articles:

Researchers at Cedars-Sinai Medical Center in Los Angeles think they may have identified the cause of this mysterious and very common condition, and found an effective way to treat it. The Cedars-Sinai researchers found that 78% of the IBS patients they tested had what they called small intestinal bacterial overgrowth (SIBO), a condition in which excessive amounts of bacteria are present in the small intestine.

The researchers treated the patients who tested positive for SIBO with a 10-day course of antibiotics. Tests at the end of that time found that 25 of 47 patients had no bacterial overgrowth present, and that 12 of them had no IBS symptoms, while the symptoms were "significantly reduced" in the other 13. The symptoms were also reduced in the patients in which some SIBO was still detected, suggesting that if treatment had been continued until it was completely eliminated, perhaps with an alternative antibiotic, better results would have been obtained.

( New article)RE: dairy product consumption Johne's disease is an infection that cows pass on to humans as irritable bowel syndrome. Johne's disease has no cure and costs dairy producers over $1.5 billion each year [source: USDA]. The bacterium, Mycobacterium avium paratuberculosis (MAP) causing Johne's is not killed by pasteurization and is passed onto consumers in milk, cheese and ice cream.

I am going to take this info to my gastro doc to see about getting tested for these!!!

Any thoughts on these articles and right sided pain issue?

thanks

Vegas Vic

[burdee]

Hi VegasVic:

YUP. I get lower right sided pains everytime I have gluten, dairy or soy accidental ingestion, but MOSTLY with gluten. The other 2 produce more cramping pain like menstrual cramps (but all that should have ended 7 years ago ). Fortunately after drinking lotsa peppermint tea or hot water or doing exercises or walking, the right sided pain moves to the left side and eventually passes with built up gas.

From what I've read about SIBO and other bacterial causes for 'IBS' symptoms, those are pretty rare. I prefer to focus my energy on gluten/dairy/soy sleuthing whenever I have recurring symptoms. I can usually trace my symptoms to something I ate, so I can avoid that next time.

BURDEE

[vegasvic]

howdy from Vegas!

wow it's interesting to know someone else gets the right sided pain- it can be sudden and sharp- the girls at work are convinced I have adhesions from my ovaries sticking to my intestines but I have to admit I have less pain on the new diet. I went nuts the other day and pigged out on some "wheat free" cookies that were made from oats-that night I was back to square one!! took about 2 days to feel better but now am having right sided pain again since eating the cookies

very frustrating and depressing. Have you explored other reasons for pain besides celiac? Or are you convinced it's gluten or possibly soy? I can't remember from the other htreads if you had your gallbladder out? What symptoms did you have before going on this diet? (as specific as possible) did you burp food up alot? Gurgling stomach?

thanks for the response-

Vegas vic

p.s- a friend I met on the board has been emailing me direct and sent this intersting article-I don;t know if you've read it before:

LOW CARB VS GLUTEN FREE DIETS

Low carb diets are gaining in popularity largely because many people =

feel good on them. The theory is that excess carbs stimulate excess =

insulin production, which leads to all kinds of health problems. It's a =

valid theory I am sure, but that's not all there is to it. A large part =

of American's calories currently come from sugar, refined fats, and =

white flour - which contain few nutrients. A switch from a diet based on =

empty calories to a nutritionally dense diet of meat and green leafy =

vegetables would dramatically improve any lab rat's health. But the =

situation is much more complicated than that.

A small but substantial number of low carb dieters discover quite by =

accident that when they cheat on the diet, they don't feel particularly =

bad unless the meal contains products made from wheat. Even a bit of =

breading on the meat in a low carb meal may give them a shaky =

"hypoglycemia attack" or their headaches or joint aches may return. =

Sensitivity to wheat products is masked by the fact that most Americans =

eat some flour in every meal and most snacks. When someone avoids =

refined foods and carbs in general long enough for symptoms to recede, =

occasional exposure may reveal the true cause of their symptoms. Not =

everyone spots the connection, but when it is pointed out and they begin =

paying attention, a significant number of low carb enthusiasts begin to =

see it plainly, and switch to gluten free.=20

The gluten free diet excludes all the baked floury and sugary junk =

foods, the buns and breads and pastas that were off limits on the low =

carb diet anyway. But it allows all the fruits and vegetables that are =

off limits on a low carb diet. Rice and corn are allowed, and rice and =

corn pastas are available. There are gluten free breads available, which =

range from terrible to pretty good. Label reading is required, just as =

on the low carb diet, but with a different slant. Products containing =

wheat, spelt, barley, and rye are must be avoided, including hidden =

gluten from malt, or soy sauce.=20

People who accidentally discover their reaction to wheat assume it is an =

allergy. In most cases, it is an intolerance, not an allergy. That means =

that shots or other allergy treatments will not eliminate all the =

problems and dangers of gluten for those people. Unless proven =

otherwise, it is best to assume that gluten reactions may change, but =

will never be "grown out of" as so many doctors say of childhood celiac =

cases. What are the symptoms of gluten sensitivity? There are so many =

that it's best to categorize them as a) deficiency symptoms, brain =

effects, c) immune system effects, and d) miscellaneous.=20

The classic reaction is Celiac Disease, a slow progressive damage to the =

villi of the small intestine. It begins in the duodenum, where iron =

should be absorbed, lactase should be made, and where the hormone to =

tell the gallbladder to dump should be made. Thus iron deficient anemia, =

lactose intolerance, and gallbladder problems should be red flags for =

this condition. Poor gallbladder function means poor absorption of fats =

and oil soluble vitamins, with dry skin a common symptom. As the damage =

spreads, the celiac may eat more and more just to maintain a normal =

weight, or may lose weight no matter how much they eat. Deficiency =

symptoms that eventually occur can include anemia, sore mouth, numb or =

tingly feet, even senile dementia, from B12 deficiency. Poor dream =

recall, stiff hands, sciatica or carpal tunnel syndrome, and eventually =

arthritis may result from B6 deficiency. Depression or grouchiness from =

B3 deficiency. Anemia, fatigue, cervical dysplasia, fibrocystic breasts, =

miscarriage, or birth defects from folic acid deficiency. Low thyroid =

function and fibrocystic breasts from iodine deficiency. Poor sense of =

taste and smell, stretch marks, body odor, smelly feet, white flecks on =

the fingernails from zinc deficiency. Poor night vision from zinc and =

vitamin A deficiency. In general the damage done to the intestine =

probably leads to leaky gut and susceptibility to Candida overgrowth. =

But intestinal damage is only the classic reaction, and years of other =

symptoms may precede them.=20

Gluten and a similar protein found in dairy products, casein, both =

resemble opiates. Some people become very sleepy after meals containing =

wheat. Severe cases have been diagnosed as "narcolepsy". Others may =

develop panic attacks. ADD and ADHD have been associated with gluten =

intolerance. Autism has been repeatedly been associated with gluten =

and/or casein. Many cases of schizophrenia have been caused or worsened =

by gluten. Any regular intake of an opiate-like substance implies that =

addiction could take place, and certainly many people have admitted a =

sort of addiction to baked goods or dairy products.=20

Many "incurable" autoimmune diseases such as rheumatoid arthritis, =

lupus, MS, thyroiditis, pancreatitis, and juvenile diabetes have been =

linked to gluten and/or casein. In vitro tests have shown that when =

gluten is added to the blood of celiacs, the cells that fight cancer =

stop working. Non Hodgkins Lymphoma is the #1 cause of death in =

untreated celiacs.=20

Miscellaneous effects: Irritation to the gut affects valve function and =

leads to acid reflux at the "cardiac valve" and autointoxication from =

the iliocaecal valve not closing properly so bacteria get into the small =

intestine where they don't belong and overload the liver with metabolic =

byproducts.=20

Now for the really little known information:=20

Gluten intolerance is often associated with poor Sulfation. Glucosamine =

sulfate builds joints, but other sulfates are needed to repair the =

lining of the gut to keep out undigested food. Poor sulfation may cause =

or worsen allergies or gluten sensitivity, and may cause the dark =

circles around the eyes known as "allergic shiners".=20

The antigliadin test is notoriously insensitive, so another test is =

often done with it, for "endomysial antibodies". This is a very =

sensitive test, but all it means is that you are attacking your own =

muscles. This may explain why so many people with Fibromyalgia turn out =

to have gluten sensitivity.=20

Gluten sensitivity is common in obesity.=20

Spelt is very controversial. Beginning in the 1940's American wheat =

breeders brought in germplasm from high protein Russian wheats, so that =

modern wheats are very different from the oldest wheats like spelt. =

Spelt contains gluten too, but some people swear they react to wheat but =

not spelt. These people may simply have a wheat allergy.

A totally different theory says that it is the molds in stored wheat and =

bread that are really wrecking people's health. Spelt is usually grown =

on a direct contract and bypasses the usual storage and milling routes =

that common wheats go through.=

[vegasvic]

P.S- has your hair been coming out more then usual?

Vic

[burdee]

Hey Vic:

YUP, I'm convinced it's gluten and casein, because my Enterolab test results showed gluten/casein antibodies and I have NO MORE PAIN when I completely avoid those AND soy ingredients. Lemmesee ... about 50 years of considering other reasons besides celiac disease for all my symptoms. Symptoms, besides excruciating pain that felt like bits of broken glass stuck in my intestines (first right and then left side), included those menstrual like cramps (too late for that to be menstrual ) whenever I consume dairy or soy; gas, bloating, constipation which eventually caused hemorrhoids; steatorrhea (mucous coated floating stools); reflux whenever I consumed dairy, acid/heartburn pain after consuming acidic foods like tomatoes, caffeine or alcohol; dry skin, dry eyes, eczema rash which could have been DH before age 10 and then again in my early 20s; anemia, growing fatigue before going gluten-free/DF, assorted aches and pains, but I'm pretty athletic, so I attributed those to new muscle pain, dental erosion, chronic sinus drainage and/or infections plus allergies (disappeared when I eliminated dairy); not much stomach gurgling, but lots of noise from 'vapors' ... I could go on, but there's a post on this website which lists common celiac disease symptoms. I had over half of those.

NOPE, still have my gall bladder. No reason to expect problems with that, because my pains weren't in the typical gallbladder area. My E-lab tests showed no malabsorption, but I was taking digestive enzymes at the time (and still am).

Interesting article about low carb diets. I tend to eat a pretty balanced diet, so have never been big on carbs, anyway. I tend to eat a higher carb breakfast (PB&J on toast) and 'Zone' lunch (very balanced) and an "Atkins" dinner (I just want meat and vegies for dinner usally). I figure restricting gluten/dairy/soy is enough without worrying about counting carbs, since I'm 5'4" and 105-108#. I DID gain 3 pounds in my last 4 gluten-free months, but kinda needed that.

I liked the 'opiate receptor stimulation by gluten/casein digests' part of that article. I moderate a website for women recovering from 'disordered eating' (bingeing, purging, starving, emotional overeating) and notice many of them binge on gluten and dairy products (just as I did). Who wrote that article? It reminds me of many of the articles written by Ron Hoggan, author of "Dangerous Grains".

BURDEE

[Mydnyt]

Hey VegasVic

Like many it seems, I was earlier diagnosed with IBS, but by my gyno following other problems.

Lower right sided pain, left side, take yr pick... Mine was as a result of gyno issues - diagnosed with endometriosis. Extreme point pain, he put down to a ruptured cyst Wont go into it too much - if you want more info, let me know...

Finally got that under control, and started having digestive probs. Dairy was the first thing (about 6 wks after last op), then just constantly felt bloated etc. That was back in '99. He diagnosed IBS and gave me some tablets to try to help with digestion - you get sick of going back

Moved for work, tried a number of docs before found one I was happy with. Even more so now, because he thought to check when I went in for blood tests for a clean bill of health. I remember the nurses trying to figure out what the hell the test was (had to look it up in the book)...

The new article you referred to... where might I find that? Would be very interested in reading it

Cheers, Myd

[vegasvic]

howdy

I'm not sure where the article was from-I'll ask the gal that sent it to me for more info on it...

I have been suffering from right sided pain off and on since i was 18 (now 30) was also told it was probably a ruptured cyst -but it is tough to confirm those kind of things since it had already ruptured (supposedly!) now that I look back I'll bet I was having gallbladder issues -not female issues. when i finally had my gallbladder out in October of 2003 the doc said it was loaded with old bile and was black-no stones though (supposedly, again) I feel after reading and talking to people w/ similar problems I might still have issues with my bile duct- maybe being clogged etc. anyways-did you have adhesions? did you get the endo removed? Did your pain go away or at least improve? Was the endo causing bowel problems? How did they find your endo? Ultra sounds don;t work I'm told-endo won;t show up on ultra sound but who knows.

Any detailed info would be great

thanks

Vegas Vic

[Mydnyt]

Hi VegasVic

Sorry taken so long to reply - so much on, so little time. And a computer that works would help too

Have sent you a PM with some further details.

Cheers, Myd

[debb738]

I'm sorry to hear about the misdiagnosis... I too was first diagnosed with IBS... then after about 2 years of dreadful stomach cramps I was finally diagnosed with celieacs disease... It's been a little over a year and I am just starting to enjoy some foods again. If you are looking for some gluten-free foods that are close to the real thing, I would recommend trying bread from Kinnikinnick bakery.. It is located in Canada, but they do have a website that you can order from. So far it is the closest gluten-free products to the real thing I have found. Other brands that are worth trying are Dietary Specialties, and the Gluten free Pantry.(their brownie mix makes better brownies than most non gluten-free recipes.) Also I do not know if you are far from Matawan, New Jersey, but there is a small store called "Linda's Dietary Delights" they have the best selection of gluten free products that I've found to date. I don't know if she has a web site, but I do know that she ships orders to customers.. There are also many good cook books on the market for celieacs. My personal favorite is " The Gluten Free Gourmet". Worth thumbing through for some good recipes. I hope that I have been able to make life as a celieac a bit better. I'm just keeping my fingers crossed that one day it will be as well known as the atkins diet. Good Luck!!

[Guest barbara3675]

It never ceases to amaze me.....I think I learn something every day off of this message board. Now I am suspecting soy in addition to the gluten and casein that I have been diagnosed as to being intolerant of by Enterolab. I had soy ice cream last night and it really was pretty good, but my tummy kind of hurts. Do you think it could be the soy ice cream from last night? I am really careful about the gluten-free/cf things at this point. Here is something else for me to agree with in the long portion.....I have fibromyalgia and I REALLY agree that there is definitely can be a connectin between between gluten intolerance and fibro. My doctor practically rolled his eyes when I presented him with this hypothesis......he did a blood test, don't know which one, and it came back negative. I then decided to go with Enterolab/the full one with gene testing. It was a very well spent amount of money as now I know that I am gluten and casein intolerant and can conduct my life accordingly. I have a granddaughter who is six, who was diagnosed with celiac disease at one, we now know where she got it from/it is very heriditary. Anyone that is wondering about Enterolab, don't hesitate.....use them. Barbara