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Undiagnosed


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17 replies to this topic

#1 Niteyx13

 
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Posted 28 June 2004 - 02:46 PM

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
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#2 plantime

 
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Posted 28 June 2004 - 06:41 PM

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!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#3 lovegrov

 
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Posted 29 June 2004 - 05:21 AM

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

richard
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Posted 29 June 2004 - 05:41 AM

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
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#5 plantime

 
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Posted 29 June 2004 - 06:18 AM

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.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#6 Niteyx13

 
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Posted 29 June 2004 - 06:22 AM

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
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#7 Niteyx13

 
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Posted 29 June 2004 - 06:24 AM

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

Deanna
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#8 GEF

 
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Posted 29 June 2004 - 08:28 AM

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
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#9 lovegrov

 
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Posted 29 June 2004 - 08:36 AM

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
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#10 tarnalberry

 
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Posted 29 June 2004 - 08:45 AM

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! ;-) )
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#11 angel_jd1

 
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Posted 29 June 2004 - 09:32 AM

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:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#12 Niteyx13

 
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Posted 29 June 2004 - 09:36 AM

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 :)
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#13 plantime

 
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Posted 29 June 2004 - 09:58 AM

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.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#14 Candy

 
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Posted 31 December 2005 - 03:02 AM

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, 31 December 2005 - 03:05 AM.

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I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

#15 StrongerToday

 
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Posted 31 December 2005 - 05:42 AM

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.
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Ev in Michigan

GFDF since 8/20/05
Negative Bloodwork ~
Dr. encourages me to trust my
"Gut Reaction"




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