As we all do, I have been researching symptoms - I ran across Celiac Disease and I swear I have it! I am going to ask my doctor about it tomorrow. I have almost all the symptoms - but the one thing I find interesting is it says you are high risk for it IF you or a family member have been diagnosed withany of the following:
Type I Diabetes
Dermatitis Herpetiformis
Thyroid Disease
Osteopenia/Osteoporosis
IBS
Chronic Fatigue Syndrome
Fibromyalgia
Peripheal Neuropathy
Eczema
Sjogren's Syndrome
www.celiac.org
Hi Rhonda,
I was diagnosed with Celiac disease last fall. Of course, I raced home and did a bunch of research on it. No one else in my family has it--or any of the other diseases I have. I too found it interesting that there is a link to so many other diseases. I also have Type 1 diabetes, thyroid dz, and Sjogrens. Aint it great how having one disease makes us more susceptible to more??
I was tested for it (just a simple blood test btw) but didn't have it. That was a couple of years ago.
You can be a non-celiac but be gluten sensitive which gives you the same symptoms other then the malnutrition (I think), I do believe I am, or definitely wheat sensitive.
Interesting list though isn't it?
I am going to talk to rheumy tomorrow. We'll see what he has to say about it. He's pretty thorough and understanding and I trust his judgment.
It's so nice (NOT) to be on a list of most likely to get diseases!
Don't forget the acid reflux and bloating, just to name a few more problems. You may or may not have Celiac disease. The only real way to test for it is a biopsy of the small intestine. Many people, rather than going through all that trouble of running the doctor gauntlet, will just go on a gluten free diet. If you have a improvement of symptoms, its a good sign you do have Celiac.
The interesting thing is if you go on the gluten free diet, the small intestine heals it self. So later on down the line a biopsy would not show a problem.
In my own case, I had a blood test done. One of the results came back showing a possible indicator of Celiac. I tried to get my doctor to continue to investigate. I was told not to worry about it. So I decided to go ahead and try the gluten free diet. The results for me were astounding. The main symptom that went away was my acid reflux. I no longer have to take medication for it. That in it self, is worth staying on the diet.
By all means talk to your doctor. But if you get the doctor run around, you may want to try going on the gluten free diet.
Seeker
That list is a hoot. I guess if it was me I would say that if you had celiac disease you would be high risk for the other issues. Dependents on which was the wind is blowing.
Years ago when my hubby was diagnosed with celiac disease (1978) you hardly ever heard of it. I had studied it in nurses training and asked a doctor one time about it as my hubby was sick from before we were married. Doc said "nah". They never do listen do they.
Anyway, there was hardly any literature out there and there was no internet so I made friends with a few librarys as time went on. The one thing I learned was that people in Germany and Europe had a high incidence of celiac disease and were leaps and bounds ahead of us. They have had special food/restaurants and grocery stores long before we did in the USA.
Finally they have gotten the message in this country and it is about time. THe good thing is that they are now learning that the disease is much more prevalent than originally thought. People can have mild sprue or severe sprue and sometimes the length of time makes no difference. Our son is a mild case and my hubby has always been a moderate to severe case. There was a time when he looked like a refuge from a concentration camp.
If you have sprue or celiac disease please make sure to follow your diet all the time. When you cheat it takes the gut about a month to heal. Irish ;D
Hi Irish,
I had to nod my head in agreement with your comment about staying on the gluten-free diet. I was diagnosed with Celiac Disease ten years ago, and there is no room for cheating. ;)
Not only do you pay the piper for the next 24 hours or so, you can also cause yourself serious long term intestinal damage. There are tons of things I miss eating, but nothing is worth that!
For those of you with Celiac Disease, my Neuro informed me of something very interesting on my last visit. Apparently Celiac Disease left untreated (meaning that gluten is being consumed) can result serious cognitive difficulties. I did not know that... so yet another result for me not to eat that vegetable protein.
If you go on the Gluten free diet, you will need to put on your Sherlock Holmes cap. Becoming food detective will be very important. Reading food labels and knowing what to look for in order to find hidden gluten will become necessary.
Seeker
Thanks everyone for the advice. I have looked at the gluten free diet and I know it isn't going to be easy. I haven't started it at all because I wanted to talk to the doctor first. I read that if you are tested you must be on gluten for at least one month prior or the test is for naught. I'll keep you all informed. Thanks again!
Good luck, Rhonda.
I have found the only good thing about being Celiac is the endoscopy...at least the being medicated part of the examination! ::)
Quote from: Carebear on September 09, 2010, 05:56:39 PM
I have found the only good thing about being Celiac is the endoscopy...at least the being medicated part of the examination! ::)
Yep. I love that shot they give ya' just before endoscopy. I wish I could take it home in a bottle and have it all the time. They also give me some high powered prednesone-type shot because my tongue swells. When I get that shot I go for a good 3 or 4 days without my tongue hurting.
One theory I've heard as a cause of celiac disease is leaky gut, a disruption of the gut/blood barrier. Basically a viral, bacterial, or other inflammatory cause damages the bowel allowing components of wheat to cross over directly into the bloodstream causing the immune system to develop inappropriate reactions in genetically or otherwise susceptible individuals.
As an example of another AI disease perhaps the main theory for MS up to this point has been a similar event causing a disruption in the brain/blood barrier, an isolation mechanism keeping our blood from being directly exposed to neural tissue. In this case the cells are erroneously entrained to attack nervous system tissue as the theory goes.
Some have gone on to theorize leaky gut and the crossing of the gut/blood barrier may in fact be a trigger for a large number of autoimmune diseases.
Perhaps aggravation of the gut due to celiac triggers Sjogren's symptoms and is responsible for the experience of many here that cutting back on wheat tends to ease them.
It is certainly consistent.
It has even been proposed a common suspectibility to leaky gut syndrome may explain why many families contain multiple individuals with AI diseases, yet different ones.
This seems consistent too even if theoretical.
Is the blood test for celiac good enough to determine if you have it?,, or the biopsy,, if the blood test is good enough why go through the biopsy,, I dont understand
Hi NavyDad,
The autoantibodies that doctors usually measure to test for celiac disease are called immunoglobulin A (IgA), anti-tissue transglutaminase (tTGA), and IgA anti-endomysium antibodies (AEA).
If these tests are positive, an endoscopy is performed. During this procedure they take a biopsy of your small intestine which is checked microscopically. If the villi are flat or shrunken, then a diagnosis for celiac is made.
With celiac disease you can also have Dermatitis Herpetiformis, which is confirmed by skin biopsy.
People with celiac disease are usually malnourished as well. In my case I was anemic and had osteoporosis at age 42.
Rhonda,
Funny you mention this topic, I was at the gut doctor on Tuesday and the two possible scenarios for my intestinal issues are Celiac which I had a blood test for 2 years ago and came back negative and Microscopic Colitis. In two weeks I have a colonoscopy and biopsy scheduled, Celiac markers don't always show up in the blood and Microscopic Colitis can't be seen with the naked eye as its name implies. The symptoms of both disorders are similar and both are commonly seen with Sjogren's and other AI disorders, I feel so special :D
I recently figured out I was gluten intolerant. The gut Dr. said the symptoms were those of a person without a gallbadder (which I no longer have). After a few years, and especially this past year, I began to think he was wrong. I lost a lot of weight so I tried gluten free and quit the medicine he gave me and it was an overnight success. My regular doctor would like me to have colonoscopy for damage control purposes as well as a diagnosis (biopsy).
FYI: Gluten-free has become a big deal lately. It's Hollywood's new diet. Some restaurants now carry gluten free pastas at the like. I have no problem finding gluten free food. Even my Super Target carries Betty Crocker gluten free cake mixes.
Rhonda,
I, too, was diagnosed with Celiac about a year and a half ago. Just when I thought these AI diseases couldnt get any worse, they took comfort foods away from me! Silly as it sounds, I actually went through a mourning period over the loss of my favorite foods. I cut myself off of social events because they were all centered around food that I wanted but couldn't have. But that was then. Now let me tell you the good part. The IBS is gone, the gerd is gone. My intestines are healed. I actually have one part of my body that seems to be functioning normally. Plus, and this is BIG, its one AI disease that I have some control over (and without drugs!) That may not seem like much, but these diseases take everything from us-it feels great to fight back and win a small victory. Would still kill for a bologna sandwich or Big Mac!
I wanted to tell you about a very good site: http://www.celiac.com
Also, please do not despair folks about the diet. There are so many foods that you can eat. I became a label reader 32 years ago and in the last few years with the help of the above website and a few others I have learned so much. My hubby is also lactose intolerant but can stand some milk in cooked foods if he doesn't go overboard.
I have learned to make some really yummy homemade soups using mashed potatoes as the thickener. I boil up a lot of potatoes as needed and save about one half and mash them and then add either milk or Swanson broth (in the can gluten free) or can use gluten free bouillon cubes or powder dissolved in water to thin the mashed potatoes. Thin it down, cut up the other potatoes, add chopped up onion that you miked to soften, add pieces cauliflower and broccoli, shredded cheese and some frozen peas. Can heat this and simmer in a crock pot or in a dutch oven on the stove at low heat. I always add a little sugar to my soups as it kicks up the flavor. Also you can use any seasoning that you use that is gluten free.
So many of the candy bars are gluten free as are Cheetos and many other snackies. Hubby eats etc. He has not gone hungry, I order the Energy bread by the case and the Tinkyada spiral pasta and spaghetti. These are aw some pastas and many stores are starting to carry them in their natural food departments.
The worst part about the diet is that it is expensive as far as certain foods go. Another thing you can do that is really great is when in doubt about the gluten status of a food while standing in the aisle of the grocery store-- just dial the 800 number on the package and you can ask the company and know in 2 minutes. Another thing of interest is that the rice flour is much better for dipping fish in for frying and peanut oil works really great for frying the fish. The rice flour isn't good for breading meats but on fish it is great.
You can also goggle the various companies for gluten free food. One example is Heinz. com and also google many of the grocery store chains and check out if they have gluten free foods listed. My food chain in the upper midwest has a 53 page list of gluten free foods that they revise Every 6 months. I have even called their dietician and talked with her.
Also, gluten free means oats, wheat, rye and barley. It is said that some people can get by with eating oats, but my hubby isn't one of them. He gets really sick. Thanks for bearing with me and this subject which is near to my heart. Irish ;D
Irish,
I am able to purchase oat products at my organic grocery store which are certified free of contamination from other grains. I am quite sensitive to gluten and was sceptically, however I had read that this particular product was considered gluten-free and celiac friendly. And I have had not problems at all.
For the first time in a decade I can eat hot oatmeal! Talk about your comfort food!
Also, in Canada we can claim as a medical expense, the cost difference between regular food items versus gluten-free. For example, if regular bread is $1.00 and gluten-free bread is $5.00, we can claim $4.00 as a medical expense. It reduces my taxes by $400 to $500 each year.
i might have celiac's b/c an endoscopy showed that my villi were flat. i have a lot of the symptoms but my biopsy came back negative. blood being tested for it too now.
Hi
I just found out I am Gluten Sensitive. (I sent a sample out to a lab). I still want to get the blood test done to be sure. I never had stomach cramps or anything like that. My husband and daughter both have Celiac Disease, and both would be able to tell if they ate something with gluten in it. (pains, gas, belching, swollen stomach) Having a thyroid problem also, I thought that was why I couldn't lose any weight, but since I've been eating a gluten free diet for about a month now, I'm starting to lose the stomach pouch! :) At least something is positive in all this. We have found a lot of resturants have a Gluten Free menu, you just have to ask for it. Some of the big chains like Olive Garden, PF Changs, Out Back, I guess you can just google and see what comes up. I had to laugh, the first thing my daughter googled was gluten free candy!! There's actually quite a few.
Carebear, If you are from the US and check on the celiac.com site there used to be a section on how to do the calulations for the tax deduction.
I would love to give hubby the oatment, but his gut is so sensitive that he just suffers from a lot of stuff. Yesterday and the day before he was so sick to stomach and cramps, etc. WE sat and went over all he had eaten in the past 2 days. I always cook gluten free so wasn't anything that we could nail down.
Finally figured out that his cardiologist had called and told him to cut his one BP/fluid pill in half. So we did that and by that afternoon he was sick and the next day was worst. So, it didn't bother him when he took it whole, but when it was cut in half it was very fine powder and apparantly dissolved too soon and irritated his gut. Doc said to stop the med and today he is fine. Just to take a whole pill when BP is over 140.
People who have celiac disease can really have some weird things happen to their gut. Not unusal to have the colitis to go along with it. My hubby has been unable to tolerate the heavy or dark colored dyes used by some drug manufacturers. This intolerance of dyes in mentioned in a lot of the literature. We always have to make sure the meds are light colors or white.
He has problems with some of the things that are supposed to be gluten free. Some of the dark gluten free breads that have the brown rice or some other infredients will bother him. One time I thought I would be so nice and make buckwheat pancakes--buckwheat is gluten rree--and I darn near killed the guy. Sicker than a dog. I think sometimes hee isn't happy with me, but one just never knows what is going to bother a celiac.
Any other horror stories out there???Irish ;D
Wow! I had no idea this was so "common". I spoke with my Rheumy on Friday and he said he agreed I should be tested. The last bloodwork showed my Vitamin b12 and Vitamin D levels were nearly non-existant. He said with the vitamin depletion he is convinced something is going on in the digestive system. So, I have my GI referral. Just have to make the appointment - dreading it because I know he will want to do a colonoscopy (GULP!). I am 51, have a family history of Colon Cancer and just dread the test something awful. But, I will make the appointment.
You all offer some great guidance and advice. I am so thankful for all of you.
Rhonda, Did you have low folic acid also??? My hubby had no folic acid in his body when he was tested back in 1978. They didn't test vitamin D back then.
With Celiac disease or sprue(nontropical sprue is the long name) the intestines can't absorb the fat soluable vitamins and people can end up looking like they came from a concentration camp. The disease can be fatal if not diagnosed and treated. For some reason the gluten sets up a reaction that damages the villa (little tiny projections of tissue on the small intestine) that absorbs the vitamins.
If people keep eating the gluten the small intestine eventually loses the ability to absorb nutrition and a person literally starves to death even though they are eating. That is if they are able to eat. The main symptoms of celiac are lots of abdominal cramps, diarrhea, nausea and vomiting, loss of appetite, fatigue, anxiety, insomnia, sunken eyes, weight loss and peripheral neuropathy can also occur. We are all different. Many people end up having lactose intolerance also so osteoporosis can occur.
When both my hubby and son started on the gluten free diet they each gained 10# in a month and felt much better. They both still have issues. I do want to add that fats can upset a person with celiac also. I don't quite understand the situation but I would assume that too much fat involved the gallbladder and when the bile is emptied into the colon it may have a laxative effect causing diarrhea. Good luck to all. Irish ;D
Quote from: navydad on September 10, 2010, 08:25:12 AM
Is the blood test for celiac good enough to determine if you have it?,, or the biopsy,, if the blood test is good enough why go through the biopsy,, I dont understand
My husband is a celiac, and a genetics researcher, so when he got diagnosed, I got a lot of the details. The blood test is a genetic marker test, so it indicates a possibility, not "proof". The only positive way to identify it is to do the scope and look at the status of the intestine. If the villi (little protrusions that absorb nutrients in your intestine are flat instead of sticking out the way they are supposed to be, that the sign that is that you have celiac). Because your intestine will heal over time if you go gluten free, it's important to not alter your diet until you have the scope of your intestine.
All the other symptoms are "vague", in that it can include diarrhea, constipation, weight gain, weight loss, bloating, gas, etc. etc. In my husband's case, he dropped about 20 pounds and became severely anemic, but had none of the gut symptoms. He also would get really sleepy after his nightly snack of pretzels and beer (both high gluten items). His onset was in his 50's, although he probably had problems with it earlier, but it got more sever at that time.
Quote from: Seeker on September 09, 2010, 02:33:55 PM
In my own case, I had a blood test done. One of the results came back showing a possible indicator of Celiac. I tried to get my doctor to continue to investigate. I was told not to worry about it.
This is absolutely horrifying - I cannot believe that a Dr said not to worry about it. Celiac disease-even if you don't show symptoms-does so much damage - my mother has life long issues because she was undiagnosed for so long and it looks like 2 of my 3 children have it. Its a pity that in this day and age Drs are still so reluctant to believe in Celiac - considering it is around 1 in 133 people is celiac that makes it more common than Autism.
When I first mentioned to my Dr that I was worried about my son being celiac he looked at me as if I was mental!
Quote from: Carebear on September 10, 2010, 08:38:41 AM
Hi NavyDad,
The autoantibodies that doctors usually measure to test for celiac disease are called immunoglobulin A (IgA), anti-tissue transglutaminase (tTGA), and IgA anti-endomysium antibodies (AEA).
If these tests are positive, an endoscopy is performed. During this procedure they take a biopsy of your small intestine which is checked microscopically. If the villi are flat or shrunken, then a diagnosis for celiac is made.
With celiac disease you can also have Dermatitis Herpetiformis, which is confirmed by skin biopsy.
People with celiac disease are usually malnourished as well. In my case I was anemic and had osteoporosis at age 42.
The bloods tests can be inaccurate - up to 40% in children under 4 and up to 25% in adults - that is why you need to confirm with a biopsy. A skin biopsy of Dermatitis Herpetiformis is also considered gold standard.
My two cents:
I have deficient IgA and elevated IgG which on a quick search seems to be consistent with celiac disease as well as not uncommon is SJS patients. I've gone through periods of being gluten-free but, sad to say, regularly relapse (cheeseburger without the bun? come on). But this thread and the similarities I see has given me more motivation to get back to it and see what happens. As others have said, gluten-free is getting popular and more available than ever.
Gluten free products ARE more readily available. Today I noticed my Target had G-free pasta. How about that?
I just read that blunted villi are a common symptom in CVID too.
Bought some great gluten free products at Trader Joes today. Prices are getting more reasonable too. Read on line that Betty Crocker is making Gluten Free Bisquick!!! My search of grocery stores in Ohio has left me empty handed. Not available on line yet either. Any shopping scouts out there see it on the shelves, let me know. I am dying to have baked goods, but haven't gotten the hang of mixing flours, so to find bisquick would be like winning the lottery.
Wow!thanks for all of the great information on celiac!
In response to the person in Ohio who didn't have many gluten free products at her store - there are online stores. Many of the specialized online stores are very expensive. However, Amazon.com also sells food, and has a number gluten free products, some of which you can buy in bulk. For example my husband loved these rice noodle dishes that were GF, and so he'd buy them in a case (12 or 24 at a time, I forget which). He had them nearly every day for lunch, and added fresh chicken and vegetables to them.
Another basic trick around eating GF is to start rethinking what you eat - you won't find one to one substitutes for everything you like. If your favorite ice cream is cookie dough, there's probably not a GF substitute. But many vanillas and chocolate and fruit ice creams are good, so start reading the labels, and sample some new flavors. If you head towards a vaguely Asian style diet, which features a lot of rice and fish and veg, you'll be eating something that is good for you and GF. Just watch out for soy sauces, which are brewed with wheat. There are GF soy sauces though.