burdee

I already cooked 95% of my food from whole foods (if we count bread and cheese as whole foods), so the cooking at home transition has been very easy.  Dealing with the outside world has been harder.  It's still an effort to not accept a taste of someone's food at dinner, or to not grab a tortilla chip out of a basket because it was probably fried in contamination oil.  Some of me wants to just not eat outside my apartment, but eating and socializing are closely intertwined.  I also live in a city where there are gluten-free options in numerous restaurants, so it also seems paranoid to not eat out ever.  And hey, I LIKE to eat out.

Good point. It's easier to stay gluten free if you already prepare or cook most of your foods from whole foods, rather than relying on processed or fast foods, which often contain gluten.  Also preparing your own foods is less expensive than relying on gluten free processed products. Many people who have difficulty with gluten free dietn have never really learned to cook.

This is my first post, so Hi everybody.  I was wondering if anyone else found this one benefit to being diagnosed with celiac.  I hope it doesn't sound mean and immature, but I sometimes feel superior to others.  I see the long lines at Mcdonalds and constantly hear people talk about how they'd love to lose weight but just can't.  Understand that they are eating something completely unhealhy while they say that.  
Does anyone else every feel really good about their self control?  I can't help it, but sometimes I look down on people who complain about how hard it is to stick to a diet.  If you're like me (Celiac diagnosed for two years) you HAVE to stick to the diet; if you don't, the consequences are awful.  It helps my self esteem to know that I can do what so many Americans can't: have a specific diet and stick to it.  Is it always easy?  Of course not, but I'm proud of myself for doing it.

I agree with your view of celiac disease. I have diagnosed celiac and 6 other food allergies, which all cause painful gastrointestinal reactions. So I can easily abstain from gluten and my other allergies. That leaves me almost no 'junk' or 'processed' or even 'fast' food. Avoiding my allergens forces me to eat a healthy diet. Fortunately I prefer to be healthy and painfree more than I want to blend in with other people's eating choices.  

Nevertheless, many people with celiac disease or gluten intolerance have difficulty initially sticking to the diet which helps them heal from gluten reaction damage. I suspect one difference is PAIN. People who have painful reactions, not just diarrhea, but long lasting excruciating, gut pain are more likely to obsessively abstain from gluten or their diagnosed allergens. I can look at a piece of bread and recall feeling like bits of broken glass are slowly moving through my intestines for 1-2 weeks. That motivates me to avoid gluten.

SUE

In the mean time, I'm finding it awkward to meet new people and try to explain my current place in life.  The first questions when meeting people are always: "Do you work or what do you do for a living?" and "Do you have kids?"

Before I married my second husband at age 46 (10 years before I was diagnosed with celiac disease and 6 more food allergies), I was a freelance watercolor artist. After we married, I really didn't need to earn an income, because I had investments from inheritance and my husband earned enough for the 2 of us. (I never had children, due to undiagnosed celiac disease.) After about 5 years, when I had many undiagnosed or misdiagnosed health problems (all related to celiac disease), I decided to retire from teaching painting, doing 10 annual arts and crafts fairs, 'feeding' galleries with new paintings and competing in Juried shows, while trying to adjust to a new marriage, sell 2 homes, landscape 2 new properties, etc. I told my new husband I couldn't be an artist and be married at the same time. I didn't feel well, but I wanted to make the marriage work. So I became a 'SAHW' (thanks for the acronym!). Over the past 11 years I've done volunteer work (led groups at my church, a celiac support group and organized annual celiac disease awareness walks and food fairs) and taught myself to sew garments, while raising and freezing fruits and vegies for us, doing household chores and learning how to feed myself and husband with 11 different food allergies.

When people ask me those silly questions, I tell them either (1) I'm retired (at age 63) or (2) I mooch off my husband or (3) raise produce and do alterations. All those statements are true. If they want more info, they can ask.

SUE

Counterproductive and pointless i know, but i keep thinking of all the ways i could have prevented my health problems from happening.  To this day i believe antibiotics and giardia triggered all my GI issues.  I got the bug on a river trip out west..probably because my intestinal immunity was low due to the antibiotics.  Why did i go on this trip? i had a blast but was it really worth my life and my future?  If i knew then what i know now i never wouldve even gotten sick..i woulda been on intense probiotic therapy and antiparasitic meds while on the river.  something simple as popping a pill could have saved me and i could be eating a slice of pizza now.  do you guys ever think about this stuff.  i feel terrible at how many bad decisions i made that caused this.  wish i could go back in time and deliver an in depth letter to myself ..ugh..

Rather than blame yourself for contracting giardia, blame the doc who treated you with antibiotics WITHOUT recommending you take high dose probiotics during that treatment to prevent new infections and further gut damage.

I recently realized that I could have avoided another 7 gut infections if my clueless naturopath had advised me to take probiotics on an empty stomach, rather than with meals. I didn't get enough probiotics during or after my treatment for klebsiella, because he advised me to take one daily with meals. (Taking probiotics with meals reduces their potency.) My next stool test showed I had 0 bifidobacter and 0 acidolphilus bifidus. Even after he recommended I take high dose probiotics (again with meals), a following stool test showed I only had a +1 acidophilus rating and still 0 bifido rating.

Maybe I could blame myself, because, rather than trusting that doc, I should have found a new doc then. Maybe I should have looked for another doc when that naturopath told me my symptoms (of cryptosporidia parasite) were 'stress related'. I certainly should have looked for a new doc when my clueless ND told me one year later than my symptoms (of c-diff) were also 'stress related'.

Live and learn. I'm just glad I finally found a more knowledgable doc (and followed your advise to get Custom Probiotics). I'm doing soooo much better now.

SUE

I was only diagnosed a couple months ago,  and in the beginning,  I found myself kind of depressed about being on the gluten-free diet.  I missed being able to eat whatever I wanted, and it was even worse when I saw my friends and family eat things I couldn't have, in front of me.  

But now,  I feel like I don't even miss it.  I was the grocery store with my roommate a few days ago, and the guy in line in front of us was buying two loaves of wheat bread.  My roommate said,  "Does that bother you?".  My response was, Not only does it not bother me,  but I no longer have a desire for it.  I've found that the cravings are no longer there, especially since I've become so much more healthier since being gluten-free.

My reaction to the gluten free diet was very similar to yours. I was soooo glad to learn what caused and how to prevent my excruciating gut pain that I didn't miss gluten, because I didn't miss the pain. Also I was coached during my first few days by a friend whose husband has celiac disease. She told me what foods and brands that I could substitute for all the gluten containing foods I previously ate.

Then I joined a local celiac support group and purchased a few books about gluten free living and cooking, which taught me even more. When the leader of my group resigned, I assumed leadership of that group for the next 3 years. As leader, I received many free samples of gluten free foods from companies which wanted me to introduce their foods to my group. I also organized and managed 2 celiac awareness walks and gluten free food fairs in my city. Being actively involved in the celiac community and learning as much as I could about gluten free living prevented me from 'missing' any gluten containing foods.

However, I had more difficulty adjusting to my other 6 food allergies (dairy, soy, egg, cane sugar, vanilla and nutmeg) . Nevertheless, as I found substitutes (and  companies made new, tasty substitutes) for foods which contained my allergens, I no longer missed those foods. Even with 7 food restrictions, I have many delicious choices, so that I never miss any foods which contain my allergens.

SUE

Stop don't use Entero Lab and spread the word.  I thought I had a gluten intolerance and decided to go behind my doctor and used Entero Lab.  The results came back and said of was gluten intolerant.  I finally told my doctor what I did and she asked if I got any better.  The answer was a big NO.  So she redid the blood test and also did a small bowl biopsy which, as you know, is the gold standard for determining a gluten intolerance.  I had NO damage in the small intestine therefore NO gluten intolerance.  Entero Lab ripped me off.  I eat lots of gluten these days and I having NO problems at all.  (I actually had microscopic colitis and I'm fine now after taking asacol for 18 months)  Please spread the word.  Just find a good GI doctor and work with them.

Gluten intolerance manifests in many ways OTHER than intestinal damage and gastrointestinal symptoms. Gluten intolerance does NOT always mean celiac disease. Celiac disease is the intestinal damage manifestion of gluten intolerance. So you can have gluten intolerance WITHOUT having intestinal damage.  Read "Healthier Without Wheat" by Stephen Wangen, ND. That book describes all the ways gluten can harm the body, without causing symptoms of or damage related to celiac disease.

Elab didn't rip you off. Small bowel biopsy is the gold standard for determining CELIAC DISEASE, but not all forms of gluten intolerance.  Colitis could also be caused by gastrointestinal bugs (parasites or bacteria). I had pseudomembraneous colitis caused by the clostridium difficile bacteria.

I'm glad you recovered from MC, but you may want to consider other physical (esp. nondigestive) symptoms, as you continue to eat gluten. If you develop any symptoms associated with autoimmune conditions or symptoms your doc can't explain, you may want to reconsider your gluten intolerance diagnosis.

(1) When you finally get up the nerve to tell your doc about your embarassing symptoms of gas, bloating, constipation and excruciating gut pain, she tells you "Oh, that's just IBS". Everybody your age gets IBS."

(2) When you ask how to treat IBS, she hands you a diet sheet which recommends you eat more fiber, but especially WHEAT bran.

(3) When you follow her 'IBS' diet sheet suggestions and your symptoms get WORSE, not better, she says, "You'll have to learn to live with it. There's nothing else we can do."

(4) Your doctor wants to test you for all the diseases for which you have no risk factors (like breast cancer, heart disease, etc.), but can't explain or resolve your excruciating gut pain symptoms.

(5) Your doctor tells you that you're perfectly healthy according to your physical exam and test results.

Hey Karen: You could show your sister this post about MY celiac disease symptoms which included mostly constipation but rarely diarrhea:

I had MANY celiac symptoms from the time I was about 6 years old: bloated stomach, frequent bouts of 'stomach flu' when I would wake up in the middle of the night throwing up (but nobody else in the house caught the 'flu'), a chronic rash that could have been DH, steatorrhea (floating, mucous covered stools) and hard, infrequent stools (constipation?).  My mother focussed on the symptoms and took me to a doctor for a weight control diet for my protuding tummy (ignoring my skinny arms and legs), put ointment on my rash daily and gave me laxatives and frequent enemas.  I 'outgrew' the rash, but kept the bloated tummy and constipation throughout childhood and added anemia once I started menstruating.  I was the shortest person in our family. I later had a year of amenorrhea.  The dermatitis returned in my early 20s as well as more anemia.  I lost more weight but never could predict when my stomach would get bloated and gassy, so I felt 'fat'.  In my 20s I took laxatives just to stay 'regular'.  In my 30s I ate more 'fiber' for regularity and stopped laxatives, but my periods disappeared for another 10 years. (I never had any pregnancies.)  In my 40s I started taking extra magnesium for constipation, but experienced more cramping with the bloating and gas. I was diagnosed with gastritis and acid reflux and prescribed antiacids (which contained gluten) and Zantac.  I also was later diagnosed with the 'constipation' form of Irritable Bowel syndrome and told to eat more high fiber (wheat bran) cereal.    Despite magnesium, lots of fruits and vegies, daily wheat bran cereal and milk the constipation became more severe and unpredictable.  I developed painful hemorrhoids after years of constipation and needed surgery to remove those 5 years ago.   Along with bloating, cramps and lotsa gas I began to occasionally experience what felt like bits of broken glass passing through my intestines with more severe constipation (about once a month).  When I saw a naturopath about my symptoms, he wondered about celiac, but we dismissed that because I was always CONSTIPATED, but rarely had diarrhea.  A year later, after a frightening experience with an impacted stool, I saw a newspaper article about celiac disease which included as symptoms cramping abdominal pain, gas, bloating and CONSTIPATION.  I called the wife of a celiac friend about the the possibility that my symptoms were celiac disease related and started avoiding gluten the next day.  After 2 gluten-free months I did the Enterolab tests which confirmed I had gluten AND casein sensitivity and the gene for celiac disease.  Removing gluten helped to resolve the chronic constipation, but avoiding casein helped even more to become 'regular'.  However, every gluten or casein 'slip' brings back the cramping/bloating/gas symptoms and then a few more days of constipation.  I have read that the classic celiac symptoms of diarrhea, fatigue and weight loss only describes 10% of celiacs.  Many more have bloating, gas and cramping pain.  Others ALSO have CONSTIPATION.

Tell your sister to get tested ASAP.  Chronic constipation can cause hemorrhoids which requires a painful surgery and recovery.  Undiagnosed celiac can lead to a whole host of other autoimmune diseases (which may include fibromyalgia) as well as intestinal cancer.  She won't have to give up breads, pastas or pastries.  There are MANY great gluten-free substitutes for all those gluten sources.  I wish I would have heard that CONSTIPATION is a celiac disease symptom years ago and not struggled for sooo many years  with undiagnosed celiac disease.  
BURDEE