CELIAC Disease

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It has been awhile since I've posted here. Found out a few months back that my 16 y/old son & I both have Celiac Disease....WHAT A MESS! The only treatment is a gluten-free diet. Gluten is a protein chain found in wheat, rye & barley (sometimes in oats if they were processed in the same mill as the other 3).

Do y'all know how many food products have any one of those 4 in it? (Beyond the obvious: bread, cake, pizza etc & so on.)

Is anyone else around here suffering with this disease?

edited to add: I'm learning about all the things with them in it....too numerouse to list here (I was asking a rhetorical question above...I KNOW, I probably shouldn't do that HERE )

Welcome to the club!

Yeah I know how hard it is in the beginning, it's a pain in the a** but you do get used to it.

Gluten containing grains: wheat, barley, rye, spelt and kamut.
15% percent of celiacs also react to oats, even the certified ones.

Make sure you do a really good clean up of everything in your house. By a new toaster and any pots and pans you need etc.
Mark them and make sure others don't use them.

Word of advice: be very careful eating out. Even if it says "gluten free" in all probablity it isn't. They tend to cross-contaminate it in the process somewhere along the way (by implements used, surfaces that have had gluten on them, not wrapping them, anything that goes into a fryer, etc). And so you know - all commerical ice cream brands that they use in restaurants and cafes generally have gluten in them. So if you ask for a milkshake or iced chocolate - remember to ask for it with no ice cream.

Have you seen a specialist so they can get you on a treatment plan so you start healing properly instead of just avoiding more damage?

What a story this is....are you sure you have the time for it???

Yes, I've replaced the toaster, my pots/pans (coulda' just scrubbed those, but they were 25 years old & I felt like treating myself...) got all new bakeware (wanted to replace the cheap-o aluminum ones) and cleaned all the cake mixes, flour & everything else w/gluten in it out of my pantry.

I was dx w/IBS about 15 years ago. Live my life & it progressivly got worse. Esp. the last 3 years. In the past 6 months a discernable pattern emerged: I would eat my favorite Subway sandwich & after a short time I was in the ladies room, sick as a dog. It ramped up and by June of this year the "short time" got to be just about 15 minutes. Then by the end of Aug. I was so sick (in a stores restroom, no less!) that I looked it all up on the internet.

Now I had been told 15 yrs/ago that I **couldn't** have Celiac Disease because I was a healthy weight. (That healthy & obese people don't have Celiac). But in my internet research I found that to be a falacy proven wrong recently. So I looked deeper & my EXACT symptoms were listed by Celiac's again & again. I happened to glance over at my 16 y/old son & it clicked....HE HAS CELIAC DISEASE. (In a nutshell, this kid is the pickiest eater I've EVER known & he has had "tummy trouble" since he stopped nursing at 13 months old. Poor kid, he's had a near-constant stomach ache for over 14 years!)

Went to the Dr & he refused to do the bloodwork (wth???) but instead gave me a referall to a GI specialist. WHAT A FRACKEN JOKE! The "specialist" told me basically that because he can't treat Celiac Disease we won't even talk about it...but we'll do a colonoscopy & just to make you feel better I'll throw in the endoscopy.

Lieing SOB refused to give me my test results! (claimed their computers were down; but I had seen the receptionists signing in pt's & doing work on them) ALL because the tests were positive for CD!

I fired him (after calling the Practice Administrator & lodging a very loud, formal complaint!) I did get the results & moved on to a Mayo Clinic. They are so thurough there that right now I have 5 different "differential diagnosis" until my f-up this Wed. (I believe I will get the CD diagnosis then, my sons bloodwork was positive).

I think my Aspergers had a violent collision with that "specialists" arrogant ego & it was NOT a pretty sight!

Your story is not the least bit unusual.

IBS these days is just a way for a doctor to say "I don't know what's wrong, and I'm not interested in spending the time finding out, go away", at least for the large majority of individuals.

GP's and GI specialists are also not keen to diagnosis celiac disease. Because there is no drug treatment, they do not get any benefit out of it by making the diagnosis - especially since doctors recieve benefits, financial and otherwise from pharmaceutical companies on the condition that they prescribe the drugs these that companies sell. Nobody makes any money when the treatment is a change in diet.

To get proper treatment, you would have to go to a doctor who specializes in celiac disease itself. They are very rare, and even most of them are not up to date or fully knowledgable about it, especially all the complications that it can cause.

Most of us diagnosed end up being diagnosed because we did our own research and figured it out ourselves.
And 90% are still undiagnosed and unaware of their condition.

Most will tell you that the treatment is "avoid gluten". That is only the beginning. You will not fully recover simply by avoiding gluten. Most celiacs (85%) never fully recover because although they avoid gluten, it does not mean that your system will heal and recover by that alone. That's why it is very important to find someone who specialises in celiac disease who can help you do that.

I'm pretty sure that the (main) Mayo Clinic in Rochester is one of the "big 3" studying CD. I'm going to the one down in Jacksonville, FL & my GI Dr. there transfered in from Rochester. He's very knowledgable about CD but just wants to make sure I don't have anything else (BIG family history of IBD: my Daddy died of Crohn's & my brothers Ulcerative Colitis was "cured" with the surgery).

I know that there will be life-long f-up & I'm ok with that; just wanted to make sure it wasn't with some yahoo that should be called BOZO rather than Dr!

Gluten is in wheat, rye, oats, barley, spelt, kamut and triticale. Actually the oats are debatable; I eat gluten free oats but haven't tested celiac, but I do better without gluten or dairy. Be careful with processed foods, there are often hidden sources of gluten. Reduced fat dairy products can have gluten. Make sure soy sauce is gluten free; traditionally it is made with soybeans and wheat, but they make gluten-free versions made with soy only. It is much cheaper to buy gluten free flours at Asian markets than at health food stores. We use a blend of rice flour and tapioca or potato starch. They also have rice noodles and rice paper wrappers there if you like Asian food. You can get gluten-free processed foods like cookies and pasta at the health food store, but it's expensive.

I haven't had an official diagnosis of Celiac Disease, but my eczema and joint pain seem to go away when I avoid anything with wheat, dairy, white sugar, flour, and of course the laundry list of other things that I'm allergic to. So all I could basically eat are fruits, vegetables, almonds, fish, chicken and that's about it. And I get tired of eating that everyday. So I just consume gluten, sugar, dairy and flour in very low amounts everyday and just deal with the little itch and joint pain. So for breakfast I'll have something with gluten in it and fruit. For lunch I'll have fruits or vegetables. For dinner I'll have rice, chicken or fish and some vegetables. For snack I'll have a little bit of dairy with fruit.

My littlest boy has it so we've learned all about it... he eats healthier than any of us.

If you think you might have it, then you seriously need to get tested for it.

If left untreated it can cause other autoimmune diseases or cancer.

Kjas, you are so true about needing to be diagnosed (if possible) but the fact is that the only "treatment" for Celiac Disease is sticking to a Gluten-free diet. Also, no matter what a Dr diagnoses someone with, it's up to them to eat what they know is right for them.

My biggist motivator in getting diagnosed was so I could get my son diagnosed (being in public school he HAD to have the diagnosis to qualify for a gluten-free diet for his lunchs)

One "caveat" if you will: if someone THINKS they have Celiac Disease & they go to a gluten-free diet and THEN have the blood test/endoscopy with biopsies....the test will not be accurate (the gut starts to heal immediatly after cutting gluten out of your diet)

Someone already mentioned icecream, and soy-sauce, which have gluten in them, ( "tamari" is the name of the equally traditional but less widely available gluten-free version of soy-sauce; try healthfood shops for it ).

And there are many other hidden and often surprising sources of gluten, almost as if food-manufacturers were aware of the gluten-food-opioid's addictive qualities, how it suppresses our natural appetite-suppressors, for example, ( and naturally don't care about another one of gluten's food-opioid side-effects, which is to signal the body to store the carbos in wheat and whatever else you happen to be eating at the time as fat, as fast as possible, which puts a strain on the insulin system as well as the heart, and on blood-sugar levels in the brain, in addition to the food-opioid's effect on that sensitive organ's reward pathways etc, :lol and leads fairly inexorably to weight-gain ... *unless* you are one of the more "classic" gluten-sensitives, whose intestines are so inflamed by gluten that experience weight-loss and chronic malnutrition, esp in crucial fatty-acids, vitamins and minerals ) ... :

Flavoured crisps, tend to use gluten as glue for the spices etc.
Flavoured/spicy corn-chips too.
Malt in many ( otherwise gf ) breakfast cereals, ( like cornflakes ), and vinegar, plus as flavouring in some supposedly gluten-free breads and biscuits. :rolleyes
Many tinned foods, eg. baked beans in the UK at least, practically all soups, etc.
And an awful lot of packet/prepared foods.

One food-name/ingredient to look out for is "hydrogenated vegetable protein": it's gluten, and is used in a lot of soup/broth/bouillion-cubes.

Good luck with the new diet.

NB. One reason why there does seem to be a link/correlation between a *subset* of people on the autism spectrum and gluten-intolerance is that, ( as a fairly recent and reputable study, in 2010, showed ), whereas only about 5% of the general population have unusually permeable intestinal-walls ( or perhaps "merely" a genetic/early/epigenetically triggered tendency to hypersensitivity to the signalling chemical in gluten, and in casein, which relaxes the "bonds"/seal between the cells in those intestinal walls which then allows the passage of large protein molecules like gluten directly into the bloodstream ), the percentage of people with a diagnosis of autism whose intestines are abnormally permeable is 36%, ( a subset of over a third ).

Gluten is the largest protein molecule that we eat, and agriculture has been selecting for/growing wheat with increasingly high levels of gluten in the last 50+ years. The entrance/presence of this molecule into our blood stream ( undigested/not broken down ) can be the cause of many different health problems, ranging from obvious intestinal complaints/IBS etc, through mental illness ( mood disorder, schizophrenia, anxiety and depression ), and various peripheral neuropathies, plus Alzheimers in some, often caused and/or accompanied by different auto-immune diseases because the body has started to mistake the cells of its own body for the "invading" gluten molecule, and attacks such cells as most resemble it, which may be in the thyroid, pancreas, the heart, among other organs incl the brain.

It's a really fascinating phenomenon!

PS. I'm gluten sensitive, my son is too, we are both on the spectrum. My dad is both as well, and many of my german relatives on my mother's side have symptoms, my only aunt on her side was autist and suffered from myelin sheath degenerative disease ( is it muscular dystrophy? ) among other things, died early, and ate almost nothing but bread in various guises. She like my dad, and me, absolutely loved bread!

I recently ( about 3-4 weeks ago ) reintroduced bread etc ( after many years of stop-starting gf, and then a solid three years gf, 2007-2010, and another 9 months gf this last year ), because I'm fed up of not being able to eat pizza, :lol and of being so damn careful and sensible and the energy it takes to "think long-term" so much, all the time ... but my brain is already racing again, my mood much more volatile, I feel restless and spaced out, my face is a pale haggard ruin, I'm putting on weight, my sleep is disturbed, and my guts once more inflamed, and I imagine that it is not having a great effect on various other organs. ... May stop again soon. :lol

Best wishes with the changes, which can be very powerful, especially after the 6 month gf-watershed, ( it takes up to 26 weeks for gluten to leave its last "hiding places" in the body, most particularly the liver ).

PPS. Probiotics apparently can help, by strengthening the presence of "friendly" bacteria in the intestines to aid disgestion, absorption, and repelling candida which thrives in an environment full of partially digested carbohydrates!
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I've been gluten-free for close to five years now - best decision I've ever made for myself.

It takes a LONG time to get used to the diet, but it's entirely worth it. I started to feel better after about four months of maintaining the diet, if I remember correctly. Even after 4+ years, I'm still discovering gluten in things I had otherwise thought safe, so be sure to read up on the sneaky forms it comes in - lotions, shampoos/conditioners, soaps, stamps, envelopes.. gluten is everywhere. www.celiac.com has a good (if not a bit overwhelming) list of ingredients that are safe/unsafe.

Frustratingly enough, I've developed an intolerance to dairy, eggs, and potentially even soy as well over the past year. It seems that my body congratulated me on four years of being gluten-free by adding new items to my "Do Not Eat" list.

Yeah if you think you have celiac disease, it's really important to find out and change your diet asap. My dad found out he had it later in life only because his blood was so deficient of iron that the doctor thought he had internal bleeding! Thankfully though, they tested him for celiac and fond the true cause.

BTW does anyone know if you can still have celiac if your results on the blood test were negative?

You can.

The blood test and the biopsies both have a 30% rate for false negatives. (In other words it says it's false, when it fact, it is positive)

You also have to be extremely careful with the blood tests - if you are not eating enough gluten, or not eating it frequently enough it will not give you an accurate result. Technically you need to eat at least the equavilant of two pieces of toast (or same amount of gluten) per day for 3 months for them to be accurate. Sadly most of the people who are sent for blood tests are never told that - or if they are they are told it is only for a month, not 3.

Wow that sounds really depressing. Sorry. I know I have to follow the gluten free diet but after a few weeks I feel sad and deprived from what I love. Can you please tell me what you eat in general for breakfast, lunch and dinner? I really need some ideas. After someone here told me that it can lead to cancer and autoimmune diseases, I have been trying to eat gluten free but it's hard. Here's what I usually eat:

(I am avoiding gluten, dairy, white sugar, white flour, eggs because I am highly allergic to them along with peanuts and hazelnuts)

Breakfast: 2 gluten free waffles with pure maple syrup, 1 orange and green tea

Lunch: Smoothie: 2-3 bananas, strawberries, mangoes, and almond milk

OR
Sauteed onion with carrots and chicken

Snack: Bowl of gluten free Chex cereal with almond milk

Dinner: rice with chicken, steak or fish and some vegetables

Snack: 15 almonds

And I usually have 1 cup of coffee with 2 packets of truvia or stevia and almond milk.

And of course I drink plenty of water during the day.

Some things that might help you with the dietary switch: (1) health food stores with a specific gluten-free aisle or products at least labeled "gluten-free", (2) gluten-free cookbooks to help you learn what to replace now undesirable foods with, and (3) associations and organizations that cater specifically to Celiac disease and disorders requiring a gluten-free diet.

Let me explain:

(1) Health food stores will have more products available that are gluten-free or stock products that are more likely to be labeled so it will be easier to find things -- specifically products that are pre-prepared.

(2) Cookbooks will not only give you recipe ideas and meal ideas but they will help you get used to the new ingredients you'll now be using instead of the old ingredients that you're no longer able to. I found cookbooks particularly useful when adjusting my diet -- which is a very strict vegan/vegetarian diet that took a lot of tweaking and learning to get down just right.

(3) Organizations that cater to Celiac disease and other disorders that require gluten-free diets will have information readily available on their websites to help people that are just diagnosed. If you search for them using a search engine, you should be able to find recipe ideas, ingredient lists, and possibly even get-togethers where you can learn new recipes. It would also be worthwhile to search for "gluten-free recipes" online because there are many sites that are diet-specific and cater very well to vegan, vegetarian, gluten-free, raw, etc. diets and will have loads of recipes as well as, usually, a good social circle if you have questions to ask in the cooking category.

As for me, I don't have Celiac disease but I am on a very strict vegan/vegetarian diet (some people define them differently so it's easier if I write it like that). It's been very hard and though I'm not compelled by a disease to pursue this diet, outright, my health and mood have changed so much for the better on this diet that it has effectively become a health matter. It is really rough to have to adjust everything you're so used to. Food is also such a social thing so it can make you feel a bit on the outside at social gatherings -- especially when others aren't knowledgeable about what your diet is all about.

I hope my suggestions are helpful and that you find some delicious gluten-free foods and recipes that make all your non-gluten-free friends get tempted to convert!