• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Undiagnosed
0

18 posts in this topic

I will try to make this as short as possible.

I got pregnant when I was 17, almost 18. At this time in my life I became exhausted all the time, and was diagnosed with hypo-thyroidism. I have continued to be constantly tired, and I was diagnosed with IBS about a year ago. I was diagnosed with juvenille rhumaoid arthritis at 2 years of age, and I was also lactose intolerant as a child. I am now 27. I recently found out that my cousin is at least gluten intolerant, but she has not had the test for celiac disease. I also started extensively reading up on the disease, and I find that I very trully believe I have it (as does my mother: a RN of 40 years). My IBS symptoms have worsened the last few months, to the point of where it has started scaring me. I hurt constantly, in my joints, abdomen, and I can barely get out of bed in the morning. I went to my doctor and she handed me a presciption for an IBS medication that I have not filled (the last doctor gave me the same thing - ignoring the tired aspect), then charged me $85 for the office visit. When I asked about celiac disease she said "well, those tests are very expensive (I don't have insurance) and cutting down on gluten may help you feel better and lose some weight". Well, I am 115 pounds, so I don't need to lose weight, and if this is the disease I have I don't think "cutting down" on gluten is going to help. Now I know from research that many celiac symptoms start at pregnancy, and I have also found that it is genetic. I decided to try the diet and see what happens. I have been on it for 2 weeks now, and I have messed up a few times on complete accident. I was wondering if anyone has any suggestions. Should I find another doctor? I know that I need to be on a gluten diet to get accurate testing. I kinda wanna know one way or the other, and I would like to know about my kids chances too. I am sick of being ignored. I don't think I just have IBS, or at least just IBS. I'm just looking for some advice, and I want to know what others did when they felt that doctors ignored them. I am too young to feel so sick and tired all the time, and this has been going on for 10 years. Please help! Thanks!!!

Deanna

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Deanna, The tests are very expensive. While the blood tests are not invasive, the endoscopy and biopsies are. Some doctors do not accept the improvement with diet change, but mine did. I did the diet before knowing that I had to be on gluten for testing, and decided not to go back. One small accident leaves me miserable for days on end. The beauty of celiac is that you do not need a doctor's note or prescription to treat it. You simply state on the diet. You do need to remember to always read the labels. Gluten is hidden in the strangest places, the last one I found by accident was in Hiland Yogurt. You are welcome to come on here, ask questions, and read. We will help as best we can!

0

Share this post


Link to post
Share on other sites

Do you have the money for the blood tests? If so, what does it matter how expensive they are?

richard

0

Share this post


Link to post
Share on other sites

I do agree that it is important to be tested, especially for your kid's sake. If you are tested positive, then your kids NEED to be tested as well, if not then you don't have to worry as much about your kids. It is also nice to know 100% what is wrong.

God Bless

0

Share this post


Link to post
Share on other sites

Enterolab does stool testing, they can find gluten sensitivity with it. You can use that test for yourself and your children, without a doctor's prescription. Regardless of the way you are diagnosed, the treatment is the same: no gluten whatsoever for the rest of your life. You can keep going from doctor to doctor, trying to get the tests done, that is your choice to make. For the bloodwork and biopsies, you usually have to have major problems before a positive result will come back. By then, you are extremely ill, and have a long road to travel back to health. I guess what I'm trying to say, is that it is your health, you are responsible for it. Yes, celiac is genetic, if you have it, your child might have it. You have to watch for it, and eat for it, for your family and yourself. Speaking only for myself, I am glad my doctor chose to accept the results of the gluten-free diet. She said the other tests were expensive, invasive, and the gluten was obviously detrimental to my health. "First cause no harm" was what she was talking about in regards to the testing. The diet, while inconvenient for six weeks, showed such a dramatic turnaround, that it was definitive. The diet itself, as any scientist will tell you, is a test.

0

Share this post


Link to post
Share on other sites
Ads by Google:


My husband and I do have some savings, and could probably afford the blood test, although I really have no idea how much they are. If I could get a doctor to pay attention. They almost act as if I make things up, especially when I tell them I am so tired. Has anyone else had this problem? I saw another post on here after I posted mine about kinda the same topic. Someone had suggested to that person trying EnteroLab, but some people were kind of skeptical. Does anyone have a reason why EnteroLab is bad? I will have to talk more to my husband about it (he is kinda sick of the whole thing). It seems we have a couple of options. Thank you for the replies.

Deanna

0

Share this post


Link to post
Share on other sites

Thanks Dessa! You answered my reply before I posted it... :D

Deanna

0

Share this post


Link to post
Share on other sites

Deana,

I too am 28 and after 10 years of GI issues (same as you, but I don't have children yet), all I ended up with was the IBS diagnosis. I feel the same way about it as you do. The doc gave me a prescription for an anti-depressant and that made me feel so horrible that I threw it out. I was very disappointed that my doc was so quick to rule out other things before he diagnosed me with IBS. And get this: he even wanted me to do some experimental drug thingy for it!! So, I found another GI doctor. This time, when I called the office I asked the scheduler for a doctor that was very familiar with celiac and other intolerances. I'm under the impression that you don't have insurance for the tests and I have no idea how much they'd be. I suppose if I couldn't afford the tests, I'd see what I could modify diet-related. There are things such as casein (milk protein) and lactose (milk sugar) intolerances as well. You could always try eliminating milk products for a while too to see how you feel. Another thing.. does anyone in your family have an auto-immune disease? Celiac is auto-immune and I know you've heard that it's gene-related. I was just wondering because you mentioned your joints were achy. Good luck with everything and I hope you feel better.

Gretchen

0

Share this post


Link to post
Share on other sites

The cost of the test depends on where you live and who does it. Mine were something under $300 (for blood tests) but I've seen higher elsewhere. Of course a biopsy costs a good deal more.

The controversy over Dr. Fine's tests stem from the apparent high percetage of people he finds gluten sensitive, and the fact the he won't disclose exactly how makes his determinations. Nobody can take the standard scientific step of duplicating what he does. Also, if you want to find out if you actually have celiac, that's not what he's testing for. He's testing for gluten sensitivity or intolerance, which in some people might be an early stage of celiac, but might not be in others (This info from Cynthia Kupper, head of GIG).

richard

0

Share this post


Link to post
Share on other sites

Deanna,

I'm probably the biggest skeptic of Enterolabs on here. The reason I am skeptical of the company and Dr. Fine is because he refuses (and notes that he has choosen not to do this) to submit the results of his research behind his method to peer review. He has kept the method closed from other doctors in the community. And when questioned on this, becomes a bit defensive and says that he shouldn't have to prove his method. (When I say "he says", it comes from reading his replies to other people's emails which have been posted on this, and other, sites.)

These signs are ones that we are often warned of may apply to quack medicine in general. That is NOT to say he is a quack. Based on what people here have said about their experience with the tests, I would say there's a good chance my skepticism is not warranted after all. But until he plays open and honest with the medical community, I will question his science and his motives. Part of the reason I feel so strongly on this is my education in the sciences, and the respect and necessity for peer review that was instilled in me in my training, thus I have a moral issue with his approach. I cannot fault anyone, however, who decides they are sufficiently convinced that his method is valid and it is worth it for themselves to use it. Many people on this site can attest to the great value it has been in their lives, and there is value in that as well.

As studies in Europe continue, it's looking likely that the stool analysis method similar to his (for things other than fat content, which was a very old, unreliable method of testing) may come to be a valid method of testing. So his method may be independently verified regardless of his participation in the peer review process.

This is why I am personally skeptical, and why I personally won't use the tests. But I know other people don't find these sufficient reasons to avoid using his lab, and it's a decision you have to make on your own. (hehehe... if you want to go by pure consensus, my skepticism will lose by a landslide! ;-) )

0

Share this post


Link to post
Share on other sites

Tiffany, just a quick note to let you know you aren't alone in your skepticism. I also find Enterolab to be fishy for the same exact reasons that you mentioned in your post.

-Jessica :rolleyes:

0

Share this post


Link to post
Share on other sites

Wow, thank you all are the great responses. Gretchen I know how you feel with the anti-anxiety and/or depression meds. I have been on prozac, paxil, zoloft, xanex, and they all made me either sick, or feel worse. They keep switching me around, and I eventually just stopped trying to take them all together. I started praying alot more and I learned ways to help me relax. I still have anxiety a lot, but not nearly as bad. I go nuts whenever someone gives me narcotics, and they all act like I am crazy when I say I don't tolerate them. I do not have anyone in my family who is a diagnosed celiac. Like I said before my first cousin is gluten intolerant, but she has never had the test for celiac disease. The last IBS med they put me on made me nearly dehydrated, living in AZ that is not good! :P Then this last doctor wanted me to take Zelnorm (I think), and I am just so leary of meds that I didn't do anything about it. I can even remember one time getting a X-ray to see if I had pnemonia (sp?) and the doctor could see some of my digestive tract and her comment was "you have a lot of air in your colon, if you experience severe stomach pains go to the ER immediately". She never explained further, and I always wondered exactly what that meant.

I am so confused as to what to do. I think I may try and find some insurance that may pay for these things I need. I do really want to know one way or the other what is wrong with me. This has gone on for so long. And, if my kids have it I want them to be able to start a healthy diet for them now, so that they don't end up like me.

How long as it taken others after going gluten-free to start feeling better? I have found the last few days that I have messed up more than a few times and ate gluten products. But, there has been a few days there where I seemed to be less gasey and bloated.

Anyway, I did not mean to get on a tangent. I appreciate the help and the opinions!

Deanna :)

0

Share this post


Link to post
Share on other sites

I discovered mine by mistake. I was trying to find out if my mom's food allergies caused her colon to rupture, which caused her death. I was wading through a myriad of things, when I stumbled on celiac. The article in Woman's Day came out at that time, so I tried the diet. since my case was not advanced, I was feeling better in just a couple of weeks. The more severe the damage is, the longer it takes to heal. I had tried going gluten-free before, when I was looking at my own allergies, but was not successful with it. Turns out I was missing a lot of hidden gluten, so I tried it again in February 2004. This time, I did it! And the results were fabulous! No bloodtests, no biopsies, no Enterolab. Just a gluten-free diet. Less hassle, less expense, less pain. I guess my positive results to the diet make me want to tell people that they don't need a doctor for this, but I do understand that some people need that confirmation and closure. You have to talk to your husband, and decide what is best for you.

0

Share this post


Link to post
Share on other sites
My husband and I do have some savings, and could probably afford the blood test, although I really have no idea how much they are. If I could get a doctor to pay attention. They almost act as if I make things up, especially when I tell them I am so tired. Has anyone else had this problem? I saw another post on here after I posted mine about kinda the same topic. Someone had suggested to that person trying EnteroLab, but some people were kind of skeptical. Does anyone have a reason why EnteroLab is bad? I will have to talk more to my husband about it (he is kinda sick of the whole thing). It seems we have a couple of options. Thank you for the replies.

Deanna

You could probably try a gluten free diet to see If that helps with symptoms.Whole foods markets sells Gluten free bread flours.I got some and I feel better already.I did get a $150 enterolab DNA test,which doesn't have to be repeated,and I carry both the genes for celiac,but I haven't been to a doctor about it.But with my symptoms and the tests results ,that I have the genes for it-I figure that I have it doctor or no doctor-so now I just try to avoid wheat and gluten. Get gluten free flr and make the recipes ;anything calling for flour (soup,gravy) should be substituted with potato starch,corn starch.That's all the doctor would probably tell you-if he could even find and diagnose it. Edited by Candy
0

Share this post


Link to post
Share on other sites

My blood tests came back negative, so next I spent good out of pocket money on food sensitivity testing test - those came back practically negative as well! While part of me would like to pursue other tests I really have to stop and ask myself "why bother"? It really doesn't matter to me what the paper says... if it came back saying I had no gluten sensitivity symptoms I still wouldn't run out and eat any. While I may test different foods later on, it won't be becaue an expensive piece of paper told me it was ok.

0

Share this post


Link to post
Share on other sites

Hi all,

I'm new to this site, but not to living wheat, milk, tomato, nut and sugar free.

Quick history:

I've been living on a restricted diet for 25 years, worked with a nutrionalist who didn't know what she was doing, really, for almost three years. She had me living on yogurt and rice cakes, but couldn't help me find foods that didn't either give me heart burn or make my stomach blow up the size of a basket ball.

After years of condemning myself for eating too much, when it was obvious I wasn't and still over weight, I finally gave up. I went to a naturopath. He was a quack, but got me on the right path of process of elimination diet and supplements so I could have the energy to deal with this. I was also exhausted constantly and drank coffee (caffeinated) and relied on fruit sugar, breads and sugar to keep me going. I thought I couldn't process meat so stayed clear of that, when all along I wasn't getting enough protein and my hair began to fall out. I'm telling this is slightly out of order but it's all the same.

I have studied, trusted my choices, and have trusted myself, (since I am the only one to deal with the consequences). I read, by suggestion of a reliable doc, The Diet Cure. I have been doing the amino acid therapy suggested in that book (taking supplements on a schedule) and not eating those foods that bother me and taking vitamin B's in regular doses all to my benefit. I now can monitor my blood sugar better (extreme hypoglycemic, which is connected to my hypo-thryoidism that went unacknowledged for years although I was tested many times and my results came back within "normal" ranges it took a huge cyst to grow and block my throat/air way before someone would put me on thyroid meds. It changed my life!)

No matter what the tests say, (I was once tested positive for cancer and instead of listening to the doc and falling apart I changed my life) I say listen to yourself. We all can't live exactly like one another, but take clues and hints to how our lives can be lived to their fullest. I don't want to sound preachy. I know what I know through trial and error, antidotes and education. Dr. Andrew Weil is another great resource. He suggested that we each our better healers than any outside source. We can seek advice, suggestions and helpful information to heal, but ultimately we heal ourselves. I feel my body is helping me to live a life of accountability and integrity. I do what I say and it shows in my food. When I am out of integrity with myself my body revolts! That's between my body and me.

0

Share this post


Link to post
Share on other sites

I think Dr. Fine is finding out that the human race is maladapted to eating wheat and that's going to make a lot of people uncomfortable... think of the argriculture industry. You thought Pharma was big bidness... well, agriculture is probably lots bigger. Add to that the food processing industry and boy, we're talking about a lot of GDP.

As far as Dr. Fine's credientials they're very impressive. He has his CV online. He is published, has published and is publishing again.

It took American doctor's 10 years to believe, understand and assimilate the reality of H. Pylori into common practice after it was discovered and published. These guys don't change quickly. The current "gold standard" test, which misses a lot, is 50 years old. And, according to Dr. Fine, only catches celiac disease when it is in the end stage. Good thing they don't wait until cancer metastisizes before they call it cancer and treat it!

I'm happy Dr. Fine is going to publish his findings on gluten sensitivity but don't expect any major changes in your physician's attitudes for many, many years to come.

Ultimately it is up to each of us to figure it out. I think there are far worse things in life than giving up eating certain foods.

Right now we're the luckiest people to be alive when we are. We have the Internet to research our issues and figure them out for ourselves. If we left it up to the typical doctor, we'd be spending our short, sick, miserable lives begging for help and walking out with prescriptions for antidepressants.

Edited by Nancym
0

Share this post


Link to post
Share on other sites
I think Dr. Fine is finding out that the human race is maladapted to eating wheat and that's going to make a lot of people uncomfortable... think of the argriculture industry. You thought Pharma was big bidness... well, agriculture is probably lots bigger. Add to that the food processing industry and boy, we're talking about a lot of GDP.

As far as Dr. Fine's credientials they're very impressive. He has his CV online. He is published, has published and is publishing again.

It took American doctor's 10 years to believe, understand and assimilate the reality of H. Pylori into common practice after it was discovered and published. These guys don't change quickly. The current "gold standard" test, which misses a lot, is 50 years old. And, according to Dr. Fine, only catches celiac disease when it is in the end stage. Good thing they don't wait until cancer metastisizes before they call it cancer and treat it!

I'm happy Dr. Fine is going to publish his findings on gluten sensitivity but don't expect any major changes in your physician's attitudes for many, many years to come.

Ultimately it is up to each of us to figure it out. I think there are far worse things in life than giving up eating certain foods.

Right now we're the luckiest people to be alive when we are. We have the Internet to research our issues and figure them out for ourselves. If we left it up to the typical doctor, we'd be spending our short, sick, miserable lives begging for help and walking out with prescriptions for antidepressants.

I agree completely! Never underestimate the resistance within the medical community (fueled by big pharma concerns) to admit to a solution that involves dietary/lifestyle changes and not meds. And when you consider the reach of the grain industry (where do you start? Almost everything we eat is wheat based or contains some form of glutin!) which would/will do everything in its power to discount any suggestion that grains are bad for us.

As for Dr. Fine, I am putting a lot of faith into his method because I believe him to be a pioneer. I have dealt with this before, with my son. Briefly, my son has a condition called hyperhydrosis, which is basically overactive sweat glands, which in his case led to continually dripping hands. It was a huge social trauma for him. All doctors wanted to do was have him smear dangerous steroidal creams on his hands (didn't work), or get expensive botox injections in his hands (lasts a few months for about $800 per time), and various other stupid, useless band-aid treatments, none of which worked much. I researched like crazy and discovered a doctor who was a specialist in endoscopic lung surgery, and he had been lured into doing endoscopic surgery to snip a particular nerve (sympathetic nerve) which is responsible for the overactivity in various sweat glands, so now he does both. He lectures on this all over the world, and has published a few things, but still hasn't gotten wide attention and the surgery doesn't have much acceptance for some reason. This surgery is highly controversial and not accepted or known in the medical community as a solution, and unfortunately there are a lot of not so trustworthy doctors cashing in on the surgery as well. But my research and checking led me to believe this doctor was a true pioneer ahead of his time, and he'd done this surgery hundreds and hundreds of times, so I put my son into his care and the surgery was successful and totally changed my son's life for the better.

I called every doctor in Sacramento who would/should have known about his condition and and not a single one knew anything much (sounds like celiac!!) and no one had even heard of the sympathectomy my son got. I was astounded, because this was not totally new. So my opinion about the diagnostic abilities of most doctors has been formed by this unpleasant experience in solving my son's problem.

I think it's pretty sad that all of us can easily find out and learn more about celiac disease than most doctors seem to know. What has bothered me, too, is that if you see a doctor and mention the possibility of celiac, if they don't know about it they just dismiss the possibility....they don't go off and research it so they DO know about it and thus help you. Very disappointing, but this is why I have taken my diagnosis into my own hands and am going the Enterolab route to verify a few things. What those tests will tell me should be enough, I think. I don't need the expense and danger of a biopsy etc. Fact is, I feel rotten a lot of the time, I'm fairly certain why, if this test verifies even just the intolerance and presence of the genes, then I'll embark on a totally serious 100% gluten-free diet because I know the possible consequences of continuing to eat gluten. I think I'll be happy with the information I'll get via this method. And besides, why should I be concerned about having the stamp of approval from a pack of doctors who know LESS about celiac than I do??? I'll take the expertise of a doctor who has dedicated himself to this disease. Certainly Dr. Fine seems to know far more than most of the others.

When my mother was fortunately diagnosed 40 years ago, knowledge about celiac was incredibly scarce and doctor ignorance was understandable. Today, with the internet and sharing of knowledge that is possible, there is simply no excise for this continuing ignorance.

What was it, about a hundred years ago that doctors didn't believe in the existence of bacteria because you couldn't see them.....

:unsure:

Another thought about Dr. Fine....If he had done his studies for a short time, whatever he postulated would have been dismissed and probably wouldn't have been accepted into the major journals. At this point, he has 5 years worth of data to back up his ideas so they can be taken more seriously.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,469
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
  • Upcoming Events