Where To Start?

[Bette]

Hello Everybody,

I am new here, I joined a few days back reading all the post to get as much information as I can about Celiac disease, or gluten intolerance.

I have a long complicated history with many diagnoses and many symptoms that there are simply no answer to. Right now I am being seen for endometerios, which has come back after having a partial hysterectomty 10 years ago ( kept my ovaries since I was only 32 at the time and did not want to go on hormone replacement). In the midst of my current situation, (more surgery, possibly involving the bowels and bladder, and going on Lupron- which shuts down your ovaries) my new gynecolgist, asked if any body has ever evaluated me for a gluten intolerance? I said no, so prior to me having surgery she is sending me to a G.I. for a complete work up.

Unfortunately the Dr. she wants me to see is not on my medical insurance, so now my Gynegologist and I are going through hoops to get me in to her G.I. This process my take months. So, in the meantime I wanted to see what test should be performed as far as blood test go( Iknow the G.I. will have to do the biospy), so I can get my primary care dr. to order the blood test.

As I said, I have a long exhaustive history, but as I have looked into this illness, I am shocked at all the similarties but at the same time , totaly confused. I am 42 now. As a teenager I began getting stomach aches first thing in the morning. Right when I would get to school. It would get so bad I would end up skipping my morning classes. I told my parents but they initially thought I just did not want to go to school. Eventually they took me to the dr. and eventually they did a barium scope, and I was diagnosed with spastic colon (which is irritable bowel). Although I was not given any treatment, the symptoms subsided. But when I turned 27, after having a surgical procedure, I became ill , and to this day, have never recovered. I have been diagnosed with Chronic fatigue, irritable bladder, irritable bowel, gerds, fibromyaglia, arthritis, hypoglycemia, chronic allergies with chronic sinusitis,endometriosis, fibroid uterus, carpal tunnel,pheripheal neuropathy and most recently abnormal heart valves (mitral and bicuspid).Even with all those diagnoses there are still symptoms that cannot be explained with the most troubling for me , is just feeling like I have a flu and my brain feels very disconnected all the time, like in a fog, I have a lot of short term memory problems too. Another symptom is always feeling thirsty, or dry mouth, which when I ask about that, in the past I have been checked for diabetes and it came back negative.

Is anybody familiar with all of these conditions and turn out to be Celiac ? unfornately all of my drs. don't want to believe that there can be connections to all of these problems, so far each specilist I have seen , just wants to treat the current ailement, and not consider there could be a bigger picture, at least not until I have seen my most current Dr (who suggested I should be tested).

Sorry this is so long winded. But what kind of diagnoses did you guys have, or symptoms? I need to find out which should be done first to either rule Celiac in or out. If I have to I will wait to see the G.I., but even if my insurance decides to cover her appt, this drs. first available appt. is not until the middle of June. My biggest concern in waiting, is about my 11 year old daughter. She too is having medical problems. Her problems started with a bout of chronic constipation and bloating and stomach aches when she was about 4 years old, she was seen by a pediactric g.i. , that just diagnosed her with chronic constipation, and treated her with fiber supplements. She still has problems with constipation, but not as much stomach aches now.the She then started having chronic allergies. She was skin tested last year, and she has been on numerous medications but nothing helps. She also at the same time deveolped chronic sore throats and chronic tonsillites. Her tonsils have become so enlarged for the past few years, her ent wants to remove them as soon as she gets out of school. Her surgery is scheduled for the first of June.

Thats where my urgency comes in, does my daughter possibly have it to? My plan is to have myself evaluated and if I test positive, then we know my daughter may have it to. But getting evaluated for this seems so difficult, and definatley not clear cut. So I don't know where to begin, but I am afraid to wait till I am diagnosed for fear, my daughter may be having her tonsills removed unessecarily? Again, has anybody had enlarged tonsills and go on to resolve itself after diagnoses and treatment of the Celiac disease? I hope I didn't ramble too much, but I also hope that somebody may shed some light on this. I am confused because my understanding was that Celiac was a bowel condition with clear cut symtoms relating to your bowel, not like my case with a whole set of other conditions and symptoms. Please help, where do I start.

Betty

[KaitiUSA]

I would definitely recommend you get tested. There are over 200 symptoms that can come with celiac and symptoms vary from person to person and some may not get symptoms..my main symptoms were nausea,anxiety, and weight loss.

I would have both you and your daughter tested...celiac is a genetic autoimmune disorder.

Fibromyaglia, chronic fatigue, neuropathy, hypoglygemia.....all connected with celiac...there are also other things that can result from untreated celiac which include 40-100 times more likely to develop intestinal cancer, allergies,osteoporosis, diabetes and alot more.

It definitely sounds like something that is worth taking a look at.

Celiac is also commonly misdiagnosed for things like irritable bowel syndrome. Alot of doctors do not know what they should and think you have to have particular symptoms in order to have it...that is false.

If you go to this home page you will see a link that has doctors recommended by celiacs and if you look in your state you might be able to find one...

This is an awesome place for support and great info..of you have any questions just ask...good luck

[Bette]

Wow Kaiti,

Thanks for such a quick reply, it is wonderful to see such support here. I can see by your response you have just been diagnosed in the past year. Are you getting results and feeling better with the gluten-free diet?

Thanks so much for your advice. I looked at the home page and found a name for a pediactric physician for my daughter. I am in the state of Nevada, and there is only one Dr. listed for the state of NV. The funny thing is the Dr. that is listed is the same pediatric G.I. practice that my daughter went to for her chronic constipation, (same practice, but different Dr.).

The problem I have is waiting to get in to see these specialist here in Las Vegas. There is a long waiting list to get in. My daughters first appt. with that Drs office for her bowel problems took 3 months to get in. I will definately try to get her in, but in the meantime I have concerns about the already scheduled tonsillectomy in June. If this condition is the result of something else, I would rather put that surgery on hold until she is evaluated for Celiac. I could approach her pediatric physcian with this hunch and have him order blood test, but I need to know what is the best to start with. Sorry to say, he is not very informed with this illness, but he is a nice Dr. and if I gave him the info. on what to order etc. he would do that for me. It looks like there is controversty over the antibody testing, dna testing and confusion on interprating the results. And is a biopsy always warranted ? Especially in children. I was hoping to get myself evaulated first then go from there, but as I said the waits are long here, and I probably won't get into the GI. specialist that I have been referred to till June. Again, I appreciate your response,

Thanks,

Betty

[KaitiUSA]

I was actually diagnosed with celiac about 1 year and 4 months ago in January of 2004. The diet took care of all of my symptoms.I was just diagnosed in march of 05 with graves disease(hyperthyroid) which is highly connected with celiac. My doctor said he rarely sees a celiac with just celiac.

Doctors like to do a biopsy but it is not always warranted. I did not have a biopsy done to diagnose me because it was obvious I had it...I had not only the gene but I had extremely high blood results. He didn't feel it was necessary...plus a biopsy can miss a diagnosis because there may not be damage yet or there may be sporatic damage and them not catch it.

[augie]

I was diagnosed two years ago, after many years of "stomach problems" that no one investigated properly. I was treated for reflux for a long time and then was told to have my gallbladder removed since I had gallstones (which were there for years and never caused any pain). My symptoms weren't "classic" celiac symptoms, but the more you learn about this the more you realize that there are no "classic" symptoms---everyone is different. I had constipation, not diarrhea and was gaining weight (from bloating) not losing weight. I was always anemic, but no one put that together with the GI symptoms, just blamed it on heavy periods. I finally found a great gastro guy in Manhattan who put it all together and ran the blood work. Blood tests should be your first step. Make sure they do a celiac panel, not just one or two of the tests. The endoscopy clinched my diagnosis---he could see the scalloping in my small intestine and the biopsies confirmed it. Since going gluten-free, ALL my gastro problems are gone. My daughter (age 25) was just diagnosed in October. She had NO symptoms at all, but had the blood tests done because this is a genetic disease. Her numbers were very high. An endoscopy w/biopsies confirmed she had celiac disease. She is now gluten-free too.

Get as much information as you can. Educating yourself is your best resource.

Good luck!

[Bette]

Hello everybody,

I just had another question for those that have been tested. Since I am still waiting to get into the referred G.I. physician

, probably won't happen till June. And my daughter won't get into the pediatric physicians till long after she is supposed to have her tonsillectomy. I went ahead and had my primary physician check the serum antibodies on me, just to screen and see if this is possible.

From everything I have read, these results are just a piece of the puzzle and if you are negative you can still have Celiac disease. Since I am in the position where I need an ideal if this is what is going on fairly quickly (don't want my daughter to have an unessecary surgery). Would having the genetic testing done on me , help. This way if I do not carry any of the genes, we would know right off the bat, this does not need to be pursued. Correct, or am I wrong in thinking. This stuff is really confusing!!!

As far as the genetic testing I am pretty sure my local lab does not do it, does anybody have a referral and ideal of pricing (I know my insurance will not cover it).

Thanks again,

Betty

[KaitiUSA]

Her dad would need to be tested to for genetic testing to in that case..because genes come from both you and him. She should get genetic testing done to see is she has a gene for celiac. I would also get specific blood tests for celiac done...you do not have to go to a GI doctor to get a celiac test. Any doctor can order a test for that. I would look for one your insurnce covers.

I would consider looking into Enterolab ( www.enterolab.com ) They do stool tests to test for gluten sensitivity, gene testing, malabsorption and so forth. This test is good and will give you insight although it is not widely accepted in the medical community. In my opinion they are a great test to have done.

As for what insurance covers, you will have to check with them because insurances are different.

[Rikki Tikki]

Hi Bette:

I am not one that believes you need the endscopy in order to get a diagnosis. Years ago I was very ill and the dr. did a blood test and told me that it showed a disease called celiac but it was so rare he didn't think I had it and should probably see a mental health doctor.

Years went by and I really thought it was stress or all in my head, I was so very ill. I went to the doctor again, he sent me to a GI doc. who did blood tests, didn't say anything but did the endscopy which showed all the villi gone. My point is that he knew all along after receiving the blood panel what it was and should of told me what he suspected. I think the decision of having an endscopy should of been mine.

I still didn't get better, some of the symptoms went away but the pain was unbearable. It ended up with the GI doctor telling me I needed a mental health doc. but I knew my body so I kept asking. The doctor ended up very irritated with me but finally sent me to a guy that did a laproscopy (sp) and found that my uterus was hanging off the abdomen wall by scar tissue. Needless to say I then had surgery and that awful pain went away. I think we know our bodies best and we need to keep pushing. there might be more than one thing going on.

My point is that I really believe that if they diagnose it with the blood that should be enough. I just don't see the need even in my own case where it had to go beyond that. I would have the doctor check you for the celiac (blood) and then follow the diet. I just don't see why they need to do the endscopy, blood work would of been enough for me.

[Bette]

Hi again,

I just wanted to check back. Just as I thought, pursuing this diagnoses (I hope to rule it in or rule it out) is not going to be easy. I am still waiting for referall to a G.I., again that may take months. So I asked my primary care Dr. if she could at least order the blood test including a genetic test for this. She happily ordered it, and suprisingly our local lab does do a Celiac antibody panel, so I had that done. As far as the HLA typing, the lab has one but they would not give me a price and did advice that it might not be covered by insurance (in my case, I am sure it would not be covered!!). So I didn't push, (not yet) for the genetic (hla typing) test. I figured I might as well wait and get results on the antibody test. Not so easy, I just got my test results back. It was supposed to be a whole panel and this is all I got Tissue Transglutaminase IG = <3 , with a reference range for a negative result = <5, so according to that test this one is normal, and the other one is reticulin AB IGA , that one just reported negative with no titer given, the last test is anti glidian which notes they have not got the results yet.

So, what do I pursue next. The lab used is not known as one of the well know national labs that set the standards on celiac testing. (From what I have read so far, even the analytical interpratation of this test, is in the eye of the(labortory) beholder!!!

I have read time and time again, try to wait to try the gluten-free diet, even though that is part of the puzzle. So I don't won't to start, until we have a better understanding of if this is possible for me and my children.

There is a reference on one of the home pages on this web site, about the genetic testing, and Kimball labrotories was used. Has anybody used them?

Thanks for everybodies input here, and Sally sorry to hear about your ordeal. We sound very familiar. I will have to have laporotomy, after my G.I. consult. My gyno. said the same thing, all the adhesions and scar tissue have pretty much glued everything together, she thinks I will have to have bowel resection too. But she feels the gluten intolerance (celiac) may be part of the bigger picture here. So, if I can ever get this properly diagnosed or ruled out,I hope to benefit from the gluten-free diet ,but I also know that it has opened the door to a lot of auto immune problems, that may or may not resolve. I am optimistic that if this is it , at least I can be diligent in pursuing a diagnoses for my children, (not only is my daughter symptomatic, but my older son is too) so they won't have to suffer years of pain and various ailments.

Betty

[Guest nini]

Bette, you sound like you have so many symptoms similar to mine. I don't understand why it is taking the medical community so long to come to grips that celiac is NOT rare, and that so many health issues are quite possibly connected to it. In Italy, they routinely test all children for celiac, why not in the U.S.?

[ianm]

At the risk of sounding like a conspiracy theorist it is because you can't write a prescription for celiac. The only cure is to eat a gluten free diet and live a healthy lifestyle. If you are healthy you don't need to go to the doctor as much or buy prescriptions with side effects that are worse then the disease itself. I went to dozens of doctors and not one of them ever suggested a food intolerance. They would just write a bunch of prescriptions and hope that one did the trick. The medical profession is no longer about finding cures and getting people healthy. It is about selling prescriptions.

[SabrinaLuvsGluten]

I wanted to add that you sound SO much like me! I get ill after having my first child...then found out I had gallstones, so I had my surgery scheduled to have my gallbladder taken out and found out I was pregnant AGAIN and waited it out until after I had my baby. Well, after the surgery, (I also had to have a d&C the same day because of retained birth products, and the next day had to have an ERCP and sphincterotomy because of stones being lodged in my bile duct) I have been sick ever since, and that was in Sept 2004. I have been to numerous doctors trying to figure out the problem. I have brain fog, been diagnosed with fibromaglia (however you spell it), that neuropathy thing where you tingle in different parts of your body, anxiety attacks, (have had my thyroid checked), weight loss, diarrhea, the list goes on and on. I have started having allergies to things, such as CT contrast, fish, things I wasnt allergic to before. I am still having problems with hurting on my right side (even after gallbladder removal) but atleast Im no longer having the attacks! I hope you find an an answer. I am waiting on some blood test results myself, so I know how it feels not to know whats going on, and to be AGGRAVATED at doctors who either wont listen, or just want to give you a pill and send you on your way. UGH. Hang in there!

Sabrina

[Bette]

Hi,

I just got the rest of my antibody test results back today. All test regarding antibodies of IgA were negative, but my anti glidian antibodies came back as equivocal . My results were a 13 and the labs reference range is <11 is a negative.

So does this suggest Celiac? Will a normal person have any antibodies to Gliadin ? I am still waiting to see the gastroenterologist. But still stuck waiting on what to do for my daughter?

Help, does anybody have any suggestions??

Bette

[Peaches503]

Hi Bette,

After reading your post, you should definitely be tested for celiac. It sounds like you probably have it, though I'm not a doctor. Many of your symptoms resemble mine, and even after I was diagnosed, I realized that many other things that were bothering me were also due to celiac. My symptoms included: dry mouth, constipation (severe, and still suffering), nausea, abdominal pain, stomach aches, headaches, bad anxiety, mild depression, recurring yeast infections, amenorrhea (absense of menstrual cycle), joint pain, weight loss and loss of appetite, and chronic fatigue. I've only been gluten-free for a month, and I've noticed some changes. My menstrual cycle started after only 2 weeks of being gluten-free. My depression has gone away, and so did my dry mouth, along with the nausea and yeast infections. Though the symptoms that bother me most have not gone away yet, I know they will with time. The best thing to do is to keep yourself educated, and even if it turns out that you don't have celiac disease, being gluten free may still help you. Hang in there, and if you need support, this is a great place for it! You're not alone, and don't worry, things will get better.

-Peaches

[shanson]

Hi!

I am new here! Has anyone ever had a Gluten Sensitivity Stool Test? The Doctors in my town are so backward - I do not even think I could find one with any knowledge or willingness to test.

i have just started in the last few weeks to be gluten-free and I feel better already! I have had many , many inexplained symptoms since October with no help from the Medical Drs as to what was wrong. I did a hair analysis and the Naturopath said the results indicated celiac disease.

I have also been taking something called glyconutrients by Mannatech, that has helped me alot.

Thank you,

SHERRY

[Bette]

HI,

I thought I would add an update. Regarding my antibody results, I should clarify that my IGA levels were normal, however my IGG anti-gliadin were considered a low positive. From what a read this can be normal for some Celiac patients, since a small portion of us have deficient IGA levels and of course my lab did not verify by taking a look at my total IGA serum count (even though they assure they do a complete celiac panel!!).

So I decided to go ahead and order the genetic testing which looks to see if you carry any of the markers for celiac disease. This way, while I am still waiting to see a G.I. doctor I can have all these test ready, plus start having my children evaluated. For me the genetic test will be another (big) piece of the puzzle. If I come back with no genetic markers, then we know we are going down the wrong path, but if I do, I will get my children tested and see if they have the markers too. I believe this will really help, especially maybe not having to put myself and my children through the biopsies.

My local lab does not do the genetic testing for Celiac. So I am using Kimball Labs. I found its number and information on this web site. They were wonderful. And the big plus, no blood draws, they will send a kit and I swipe the inside of my cheek. Since I know my insurance will not cover it, the price is around 290.00 dollars, when I get the results, and If I carry the genetic markers I will have my children tested. I was told that I will get an even further discount (for family) and each test for my children will cost 260.00 dollars. For me it will definatley be worth it.

So I will keep everybody posted when I get my results. I am so thankful for everybody on this website, you all have been a godsend!! Thanks from the bottom of my heart.

Peaches, thanks for your words of encouragement. You give me hope, that I can resovle some of my crazy symptoms too. Keep me posted with your progess.

Sherry, I believe the test your are talking about is done through Enterolabs. A lot of people on this list have used them . Go through some of the post, I have seen it mentioned here quite a bit. Good luck, don't give up!!

Bette

[KaitiUSA]

Their father should also be tested because if you do not have the genetic markers they still could from his side.

Sounds like you have a plan...keep us updated and good luck

[Bette]

Hi Kaiti,

Just when I thought I made a decision to get the genetic test done,I have another question, as to whether I am choosing the right lab to perform the test.

I picked Kimball labs, from a this website, I talked to them, the prices are fair,and the ease of testing, easy, I don't need a blood sample, just a swipe of the cheeks.

But now after reading this article Open Original Shared Link

I question if Kimball will check all the subclasses of the Dq2 alleles and the Dq8 alleles(Ichecked and their analysis checks 4 for the DQ2 Alleles (DQA1*0501, DQA1*505, and DQB1*0201/*0202) and 2 on the DQ8 Alleles (DQB1*0302). I understand the most current knowledge regards these as the most specific, but there is a lot to learn, especially with those of us who present in a atypical fashion. Plus according to this article there are more genotypes present than what is currently accepted as the typical picture.

I know you used Promethius Labs. I called them and they said they do test for as many of them as possibly known at this time, which they stated they currently check for a lot more of these subclasses.

So if you don't mind sharing what were you results with Promethius labs. I know you said you have positive testing for genetic markers but do you remember what the exact markers were.Why I ask, because aside from being missed diagnosed from the antibody test, it sounds like one could possibly be missed from having a 100 percent unequivacol gene test. Since there are a lot of subsets now. I want to make sure that the lab that I pick will test for the most current classifications of this.

Thanks again, I know it sounds like I am overthinking this, but since I have suffered for more 25 years, I do not want any stones left unturned (or GLUTEN -HA) at this point.

Bette

[KaitiUSA]

I have the HLA-DQ2 gene. My doctor had really good things to say about Prometheus and they are very reliable so he chose them to do my celiac gene and panel test. They however are a bit more expensive and you'll have to check with insurance to see if it covers....my insurance covered the celiac panel but not the celiac gene so we ended up having to pay like 600 some dollars.

Kimball I have heard is pretty good. Enterolab does a genetic testing to. Since I have not used either I don't know which one between them is better.

98% of celiacs have the DQ2 or the DQ8 gene...those are the main genes for celiac.