Your Personal Celiac/gluten Intolerance Story

[AlysounRI]

Here is my story:

I grew up in an Italian American family and ate Italian food all of my life.

I never had any problems. No one else I knew had any problems.

Well, I did have problems with dairy. I was taken off of milk when I was about 6 months old because I couldn't seem to digest it.

I am 41 now so this was back in the late 60s.

I couldn't really digest milk but I could digest yoghurt.

I still don't eat too much dairy but I loved and still love kefir and plain yoghurt, esp. the greek kind, which I substitute for most anything I cook that calls for milk or heavy cream.

I especially like goat and sheep dairy as they are more easily digestible (shorter protein chains, easier to break down).

Then in my 20s, my digestion and intestinal distress started to happen.

It started to get progressively worse and no one really knew what it was.

Doctors were unhelpful and suggested medication, which always made my queasy (I am very under medicated and tend not to do well with potent meds)

so I just suffered and just accepted that I had some kind of GI tract problem.

Fast forward about 20 years and I have full fledged IBS.

That is the name doctors give it - and they suggest putting me on anti-depressant pills, which I refused.

It became almost debilitating, and it just made me feel, well, like crap.

At this point I am in my mid-30s.

My first encounter with someone who actually listened was a naturapath who suggested that I not eat wheat and see what happens, also that I stick to a paleo diet.

Going off wheat and learning how to cook Asian cuisines (mostly Indian) fixed most of it. I will always have an irritable digestive system, or at least I started to have one in my 20s.

I fell of the wagon and a few years later the IBS flared up again.

And now, I realize that I have a massive gluten intolerance as well.

So I have realized that I must remove all gluten from my diet, not just wheat.

Without the wheat, I was almost asymptomatic, without the gluten I really feel good and truly healthy.

Just a few things to figure out that my own body likes and needs to avoid within the gluten-free universe (any of the gums tend to make me gassy!!)

But mostly things are much better. I have my energy back, I don't feel like I am walking through molasses on a daily basis and I feel great.

And I am grateful.

I hope that I can take a lot away and also share things with people on this board.

So it's very nice to be here.

I now look at gluten filled baked goods and I get an image of biohazard symbols or skull and crossbones.

Poison, avoid if you don't want massive intestinal distress!!!

I am thankful, though, for the times when I am forced to be with all the foodies at work with all of the baked goods that get brought in to have my little stock of gluten-free treats so I don't feel left

out because that is the worst.

What I will always and have always loved and make at home is Indian cuisine which is, for the most part, free of any gluten (they tend to thicken yoghurt sauces with chick pea flour!!) as long

as you avoid the (... sad Allison - that's the gluten bread that I will ever miss) naan and the poori ... but I make chapatis with a combination of buckwheat and chick pea flour and some onions, chilis, cilantro and some chili power,

through those into a crepe pan and I've got tasty Indian pancakes to go with my raita

I have suggested to others with IBS that they try avoiding wheat as an experiment and see what happens but they are resistant.

I do realize that's it's a very difficult course to which to commit yourself but there is so much good stuff you CAN eat that knowing what you can't eat and remembering how it made you feel,

is a joyful vindication of your condition. There is always temptation, but knowing the results ... well you know.

~Allison

[MarionG]

Hi All!

When I was a kid my mom said I never stopped crying. I was so bad that one day our neighbor came over and said "ohh I am so sorry about your daughter is there anything I can do?" My mom explained I wasn't sick I just cried...All the time.

I had always had constipation problems. There were weeks that I didn't go. My parents would regularly give me enemas and feed me prune juice etc... just so I could poop once in awhile. In high school I was extremely moody and depressed and I would get cramps for seemingly no reason. I was cold all the time, in the winter I could never get warm. When I went away for college symptoms increased maybe because I was eating all of that pasta dorm food? I remember the week before finals getting the most horrible cramps. I was sitting in the bathroom doubled over in pain. When they finally subsided I took some pepto bismol but I was thinking this is definitely not normal. I did some research on the internet and was convinced it had to be IBS. I went to the doctor because I kept having boughts of the cramps. He told me to stop drinking coffee and diagnosed me with IBS. The following year I continued to have cramping, so pepto bismol became my constant companion. I also began to feel extremely fatigued. Not a real kind of tired either, like a whole body you don't even want to move kind of tired. My skin felt so dry too I would wake up every day feeling parched like someone had sucked all the water from my body. My grades at school began to suffer because I would not go because I couldn't get out of bed. One teacher told me to stop taking drugs and another regularly scolded me for being so lazy. I began to think I was just lazy too and had problems concentrating. I thought if I just worked through the fatigue it would be okay, or maybe I just wasn't cut out for hard work.

My third year of college My dad and sister found out they had a low thyroid so they began taking thyroid medicine. I was convinced I must have a low thyroid too since I had many of the symtoms. My dad gave me some of his medicine to test it out. I felt a little better, I felt like the fatigue was now bearable. But I still noticed the tiredness especially after I ate breakfast and after going out to eat. I went to the doctor to get my levels tested. The tests came back and I was normal. He said that my fatigue must be due to depression and gave me a percription for an anti depressant. I didn't take that because I knew this wan't all in my head and I wasn't very depressed. Eventually I stopped taking the thyroid because it just made me feel jittery and I was still tired. I began taking herbal thyroid supplements. The past 6 moths or so I was noticing the fatigue coming back stronger and upping the thyroid supplements wasn't working. I was also itchy all over my body. I thought maybe it was the sheets I was sleeping in? I was also super gassy, there were times I would literally fart all the time. I had pretty much a constant headache And I would burp all the time to so embarrassing! I eat really healthy, a lot of fruits and veggies and whole grains. I was eating eggs in the morning for breakfast and was feeling pretty good. I began getting tired of the eggs for I got this hot cereal. It had whole wheat, oats, flax seeds and corn. I thought it was pretty healthy right? I ate it for three days and noticed the fatigue getting debilitating. So I started eating eggs again. Then a few days ago I was craving mac and cheese. So I went to the deli and got some macaroni and a doughnut. I ate both for lunch and immediately I began to feel very strange. It was like my head was tired and I couldn't keep my eyes open. I was trying to work, but I was so dizzy I had to lay down. At this point I knew something was very wrong. I began to do some research online to find out what it could possibly be and stumbled across Celiac's disease and gluten intolerance. Maybe that's what's been wrong with me all these years? My grandma has Celiac's so I decided to to give gluten-free a try. It's been 3 days since I last had gluten. The first day I saw a huge improvement and every day I keep getting better. I made a pledge last night never to go back.

Thank you to all of you who posted. I almost had tears in my eyes at times. So many people suffer so greatly because of misdiagnosis. Let's get the word out there!

[Jen G]

Hi Everyone. I am so glad I found this forum and all of you. I am self diagnosed and will not go back to gluten just to be tested. This is my story.

I have been having problems for at least the past 3 years or so (can't remember for sure due to the "brain fog"). It started with chronic diahrrea and I just always assumed it was IBD, so I just lived with it and took anti-diahrrea meds if I traveled or spent the day away from home. But my other symptoms have shown up since then. I associated the symptoms with getting older, I am 43. About 8 months ago I was diagnosed with high blood pressure and put on medication. I have had to change my meds every month because nothing was working. Each time I went to the doctor I told her about different symptoms that were really bad at the time, which consisted of:

fatigue, depression, hair loss, anxiety, memory loss (and I used to remember EVERYTHING), joint pain, muscle pain, muscle tremors, severe leg pain at night when I lay down, very easily bruised (my dog hit the back of my leg with her tail one day and I had a bruise 5 minutes later as big as a softball), dizzyness, brutal PMS, itching and allergy like symptoms, small rash bumps over the tops of my arms, gas, bloating, my teeth are terrible due to loss of enamel, swelling in my feet and legs, overweight and starving all the time, low vitamin B and D (taking supplements which aren't helping), white spots on my finger nails, spells where I get dizzy, very hot and feel like I will pass out for no reason, constantly thirsty, and most recently the high blood pressure.

For the bruise on my leg when my dog hit me my doctor said the dog hit me just right to make it bruise like that.

She also said the joint pain was onset of rhematoid arthritis and gave me a prescription.

For the itching I was given Allegra for allergies.

The swelling in my feet was from the high blood pressure.

The pain in my wrists was from carpel tunnel.

The dizzy spells and fatigue is from the high blood pressure.

The pain in my legs and the muscle tremors were from low vitamin B and D.

The depression was just depression and I was given yet another drug.

Never through all of this did she ever once put it all together...how could I have so many symptoms and nothing unusual be wrong with me...so I of course assumed it was from getting older.

Two weeks ago I was searching online for yet another diet to try and lose weight. I am about 60 pounds too heavy. I can literally put away a quarter of a pound of pasta with six meatballs and be starving a half hour later...something really wrong there. So I came across the Gluten Free diet. I started reading about it, then the association with Celiac Disease, and I read all of the symptoms of that. I was AMAZED!!!! I instantly knew that is what is wrong with me. I had almost every symptom on the list except seizures and, of course, weight loss. That night I went to the store and got gluten free cereal, fruit, yogert, chicken, rice and veggies. I started the diet on Sunday. Monday I was only in the bathroom ONCE ALL DAY!! I thought it was a miracle and won't ever look back. I called the doctors office and told her I thought I have this. She looked over my records and said "You may be right". Gee, thank you for that!

It makes me want to cry because I used to live on pasta, bread and chocolate chip cookies. I was gung ho when I first started because I was so happy that I finally figured it out and it wasn't all in my head and it isn't just because I am getting old, but now almost two weeks later I am very depressed thinking I have no choices in my food intake anymore. There are only so many things I can find...and reading lables on everything makes a 15 minute shopping trip turn into an hour and a half. I can't even buy frozen veggies because the bag says it may contain wheat....veggies containing wheat????? So now I have to pay double for fresh everything. I am on unemployment and can't afford the food I have to eat. I also don't want to not get enough of something and get sick because of that.

Now I am having issues with cross contamination...which I learned about on this board or never would have known it was so bad. I also think I may be having problems with milk and some of the harder to digest things as many of you have. I just don't know what to eat so that ALL of my symptoms go away, so I start healing and get this all behind me. I know some things may take months or years for repair, but I am scared that I will eat something wrong and have a bad relapse, or take the chance of getting another disease associated with gluten intolerance. Any suggestions about what is absolutely safe and easy to digest that I can start out with so I know I'm not eating anything bad? I would appreciate any advice or your stories that might help me. I am just so overwhelmed I don't know what to do.

Thank you in advance!!!!

[Bubba's Mom]

It's hard at first. You may not digest dairy right now if you have villi damage, but can add it back in later.

Living on unemployment makes the diet more of a challenge, but not impossible. Don't spend your money on all sorts of gluten replacements. Stick with the fruits and veggies, rice, potatoes, and non processed meats.

A small amount of meat mixed with a variety of veggies and stir fried is pretty economical served with rice.

Refried beans and corn chips are pretty inexpensive, meat loaf made with ground beef/pork with Rice Chex as a filler is pretty good and not too pricey. A bag of carrots and a bag of potatoes will last for several meals.

Peanut butter is good, eggs are good, canned corn beef hash is a meat and potato in one. Dinty Moore beef stew is good and some store brands are gluten free as well. Read labels!

Check the grocery ad and plan your meals around what's on sale each week.

You can do this!

[lilu]

So, here's our tale in brief.

Hubby - family history: father died of DM1 related heart disease, mother died of colon cancer, aunt has Chron's disease, paternal grandmother died of colon cancer. Personal history: underweight baby (5 lbs full term birth), skinny adult (46 and still wears 32 pants), about 20 years ago developed sinus problems and what appeared to be reactive hypoglycemia - didn't show up on blood tests, but experienced cold sweats, disorientation, dizziness and overwhelming fatigue if he ate simple carbs. Also has a long history of mood swings, irritability, etc. Over the last 5-6 years, but especially in the last 2-3, developed bloating, bowel swings from one extreme to the other, joint pain, chest pain, skin rashes, "crawly" sensations, fatigue, increased moodiness, loss of interest in things marital, cramps. This was on top of the ongoing sinus problems. The list goes on. Saw a bunch of specialists with little to no benefit. The only thing we learned during all the testing he's gone through was that as of a year ago he had ABSOLUTELY NO BENEFICIAL GUT FLORA REMAINING.

A friend of ours saw an article on celiac disease and when hubby read it, he felt like for the first time, he might be on the right track. So we tried gluten-free for a week, and most of his symptoms drastically improved. Rather than going back to gluten, he arranged to see a specialist quickly, and got the bloodwork done. While he tested sero-negative ("normal" levels of antibodies), he came back as a double DQ2 (increases his risk of celiac disease to 1:3). He has decided given his family history, his gene profile, and positive response to gluten-free diet that he will forego biopsy and proceed w/ lifelong diet.

Me: learning about the disease, we discovered that I have several symptoms as well and so I am also being tested. I have chronic D (4+ years now... good times) with other distinctive malabsorptive qualities too gross to outline, gas, bloating, restless leg syndrome, chronic iron deficiency anemia, history of borderline low potassium and vit D, widespread joint pain, fatigue, migraines. I'm currently throwing on a bit of an extra gluten challenge while he's out of town on business, and will have my antibody bloodwork done next Friday. After realizing that my MD knows next to nothing about to celiac disease, (I had to point out the celiac panel to her on the Quest order sheet -she was going to call my gastro [he's for another, unrelated issue] to find out which test is for celiac disease), and reading that Quest only types the beta half of the DQ gene, I decided to do the MyCeliacID test from Prometheus. That should be here later this week.

We are also having our two daughters screened, given that with a DQ2/DQ2 dad, even if my results come back negative for celiac disease genes, they have at least a 1:10 disease risk and both of them have several symptoms of gluten intolerance.

At home, we've decided to go straight gluten-free; the kids (who are actually young adults - 18 & 19) can make their own choices out, but are not invited to bring gluten into our house.

I have to say that the biggest plus in all this is that my husband, unexplainably illl for so long, is like a new man, and we are now looking forward with optimism, where for the last several years it's been just making it through the day.

[suziq0805]

I

[lilu]

Wow, suziQ, your story made me realize a lot of other indicators in MY life. I too was a skinny kid, all the way to college. I too ate anything anytime... I can still remember lunches of two big macs and fries, or having dinner at home and then going to a friend's house and eating there too, and still being rail thin. I also started my periods late, I was 16-1/2. My dad has non-diabetic peripheral neuropathy, and a long history of stomach and digestive woes, and he lost all his teeth before he was 40. I, too, have bouts of shooting pain in my arms, and have had several injuries that got labeled "repetitive stress".

The symptoms of this disease are so pervasive and body-wide that it just makes me question everything. I hope you and I, and so many others here looking for answers, finally find what we've been looking for, and can move confidently into a new life with health and vitality in our future.

Maybe not all of my symptoms are gluten related. I guess I'll only sort it all out when gluten-free becomes my permanent way of life.

Best of luck on your tests!

[fallcity]

I am 64 years old. My symptoms started at age 57. At first they were vague: constipation, mild headaches in the mornings that would disappear after eating, mild nausea in the mornings that would disappear after moving around a bit. That went on for about two years and I went through several tests...my celiac test was negative, as were other tests. Then in year three my symptoms grew worse. I was so constipated that I lived on laxatives and I began to have pain in my lower abdomen and right leg. I was so exhausted that I would sit in my car for 30 minutes or so before I had the energy to drive home, then sit in my car for another 30 minutes before I could walk into the house. I lost weight and truly thought I was dying. 

My gastroenterologist suggested an elimination diet, which I started immediately. I ate only fresh foods for four weeks and felt terrific. I then began to add back  food, one at a time and learned immediately that I was sensitive to gluten, so I stayed off it. I was 80% better, so I continued to piece together the puzzle. I learned I am also sensitive to soy, dairy, wine, non gluten free beer and most coffee. It has taken me three years to heal my gut, but I am often glutened if I eat out, so I try to always prepare my own food.  

In the US, we do not hold food manufactures accountable. The only group I can think of that is feeling the ingredient pressure is the cereal industry.  In Europe, they don't use the same cheap ingredients as we do in processed foods, like soy flour, corn flour, guar gum and modified cellulose. Here's an example: The Schar Company is a German manufacture of gluten free crackers and pastas. Recently, their US division, not their German division, changed their recipe for table crackers, adding soy flour, which is a cheap alternative to other gluten free flours. The result is that many of their customers will not be able to eat this product. However, the cost savings must be greater that the impact to their customers who are both gluten and soy sensitive, which is a common combination.