Undiagnosed

[Niteyx13]

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

[plantime]

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!

[lovegrov]

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

richard

[Guest PastorDave]

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

[plantime]

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.

[Niteyx13]

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

[Niteyx13]

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

Deanna

[GEF]

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

[lovegrov]

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

[tarnalberry]

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! ;-) )

[angel-jd1]

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

[Niteyx13]

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! 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

[plantime]

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.

[Candy]

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.

[StrongerToday]

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.

[Guest Obedientmuse]

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.

[Nancym]

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 Open Original Shared Link.

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.

[CMCM]

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 Open Original Shared Link.

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.....

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.