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This board is quite old but I'm hoping someone can continue on this topic.

I am 61 years old and in all my life and doctors' visits, I have never had a western doctor ask me if I have a family history of celiac or suggest a gluten free diet. In all honesty, I have only started having what could be considered "gluten sensitive" symptoms within the past 2 years - chronic, unexplained bouts of diarrhea, mainly. Although bloodwork has shown in the past 2 years I now have high cholesterol, blood sugar, blood pressure and a bone density scan showed osteopenia. My PCP put me on meds for everything, of course.

I recently began seeing a naturopath - and when I was running down my health history and list of symptoms she immediately asked about the family history of celiac. My father was positively diagnosed, through biopsy, with celiac sprue about 25 years ago, when nobody talked about gluten sensitivity.

Anyway, she had me do the full panel testing at Enterolab. I have one celiac gene and a gene that indicates neurological manifestations of gluten sensitivity (I have long been plagued with panic attacks and depression). I also showed extremely high (215 units, below 10 is normal) for fecal anti-gliadin and varying high results for dairy, eggs and soy. My fat malabsorption stool test also tested high (431 units and normal is less than 300). The interpretation from Enterolab and my naturopath both strongly advised I eliminate gluten from my diet for the rest of my life. Naturopath said after a year or two I may be able to try introducing limited dairy, eggs and soy back; but not until the glutin response is completely under control.

I am really struggling with this. Everyone I've talked to (including adult children, spouse, other family members, friends) is skeptical about me making such a radical change in my (our) diets based on these results. They seem to view gluten sensitivity as a "fad" and think I am going off the deep end. "Get a second opinion" - or "talk to your PCP about it". I've read enough to know that my PCP will not be of much help. And since I really only had one irritating symptom that could be related to gluten sensitivity, it's not like my life will be radically improved by going gluten free.

I guess I could choose to ignore the test results - for now. I'm trying to view going gluten, dairy, egg and soy free as preventative and something that will contribute to a healthier life as I age. But it's so hard ... especially when the people who mean the most to me think I'm over-reacting and kind of cuckoo.

Can anyone help me out here? I feel so alone ...

 

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11 minutes ago, KerryO said:

This board is quite old but I'm hoping someone can continue on this topic.

I am 61 years old and in all my life and doctors' visits, I have never had a western doctor ask me if I have a family history of celiac or suggest a gluten free diet. In all honesty, I have only started having what could be considered "gluten sensitive" symptoms within the past 2 years - chronic, unexplained bouts of diarrhea, mainly. Although bloodwork has shown in the past 2 years I now have high cholesterol, blood sugar, blood pressure and a bone density scan showed osteopenia. My PCP put me on meds for everything, of course.

I recently began seeing a naturopath - and when I was running down my health history and list of symptoms she immediately asked about the family history of celiac. My father was positively diagnosed, through biopsy, with celiac sprue about 25 years ago, when nobody talked about gluten sensitivity.

Anyway, she had me do the full panel testing at Enterolab. I have one celiac gene and a gene that indicates neurological manifestations of gluten sensitivity (I have long been plagued with panic attacks and depression). I also showed extremely high (215 units, below 10 is normal) for fecal anti-gliadin and varying high results for dairy, eggs and soy. My fat malabsorption stool test also tested high (431 units and normal is less than 300). The interpretation from Enterolab and my naturopath both strongly advised I eliminate gluten from my diet for the rest of my life. Naturopath said after a year or two I may be able to try introducing limited dairy, eggs and soy back; but not until the glutin response is completely under control.

I am really struggling with this. Everyone I've talked to (including adult children, spouse, other family members, friends) is skeptical about me making such a radical change in my (our) diets based on these results. They seem to view gluten sensitivity as a "fad" and think I am going off the deep end. "Get a second opinion" - or "talk to your PCP about it". I've read enough to know that my PCP will not be of much help. And since I really only had one irritating symptom that could be related to gluten sensitivity, it's not like my life will be radically improved by going gluten free.

I guess I could choose to ignore the test results - for now. I'm trying to view going gluten, dairy, egg and soy free as preventative and something that will contribute to a healthier life as I age. But it's so hard ... especially when the people who mean the most to me think I'm over-reacting and kind of cuckoo.

Can anyone help me out here? I feel so alone ...

 

Tell your medical doctor that you want a full Celiac panel before you go gluten-free.  A family history of Celiac should be enough reason to run one every couple of years.  The stool tests aren't considered medically valid, so they probably won't accept those.  It would be good to know if you actually have Celiac.  That would tell you how careful you have to be with gluten consumption.  If you don't have Celiac, it will make your life easier...you can still be gluten-free but you might be able to do things like take a burger off a bun and eat at most restaurants safely.

Edited by kareng

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Here are the actual tests.  

http://www.cureceliacdisease.org/screening/

Insist on the complete panel.  Let them know (your doctor) that your father had celiac disease.   Document in writing!  If you have celiac disease, your life can be improved.  All the things I attributed to aging were actually related to celiac disease.  It is never too late to feel well!  I am in my 50's but my Aunt iis 81.  We celebrate a Gluten free Thanksgiving every year!  

Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free!  There are silent celiacs.  My symptom?  Anemia.  No tummy issues.  

Please advocate for your health.  Keep all records.  Doctors can not ignore written facts and requests.  

 

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Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...

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5 minutes ago, KerryO said:

Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...

I think the gene tests are accurate.  Not sure if thier interpretation of them is.  

If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.

 

http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/

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27 minutes ago, KerryO said:

Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...

You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.  

My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.  

So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.  

Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.  

Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.  

The stool tests?  In all my research, leading celiac experts do not recommend them. 

http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/

gene testing?  Some 30% of the poulation carries the celiac genes.  It just tells you that you have the chance to develop celiac disease.  It can not diagnose you.  

 

Edited by cyclinglady

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I've just read SO MUCH about the long, arduous process of getting a positive diagnosis through traditional medicine - I'm not sure I want to put myself through all that.

Since my father WAS positively diagnosed - I carry the celiac gene and another gene that predisposes me to gluten sensitivity - and my fecal tests for gliadin were SO elevated - there are enough reasons for me to go to a gluten free diet. The true medical diagnosis would just make it easier for my family/friends to believe the necessity of it.

My children are adults and not particularly health care nuts. I doubt they would take their own risk seriously without a medical diagnosis. I'm afraid my husband, while he is trying to be supportive at this point, will grow weary of all the things I no longer serve at meals and all the places we will no longer go to because there are not gluten free alternatives on the menu. A medical diagnosis would make it easier for him, long term, I think. 

I don't have much faith in general in our western health care system. My mother died 6 months ago at age 82 after 4-5 years of many different health issues. She had given up the keys to her car in her late 70's after getting lost several times. I became her designated driver to all doctor appointments, procedures, hospital stays, etc. The incompetence and disregard I saw blew me away. I'm surprised any elderly people survive our health care system once they get on that revolving door.

The reason I started seeing a naturopath is that I am looking for an alternative to medical doctors for most of my health issues as I age. I know there are some things I still have to see them for - and of course, they are essential in trauma and emergency situations. But I am on a quest to follow a more holistic approach to my health care. If this is the path I am choosing, then I have to follow my gut (no pun intended) in situations like this. I think the only reason I would go through the medical testing would be for other people - not me.

It seems to me, that with so many people being gluten intolerant these days, a decent M.D. would listen to a patient that was adamant about their intent to live gluten free - positive celiac diagnosis or not (and especially with the gene and stool test results). I mean, they don't tell vegetarians they have to eat meat ... and vegetarianism is a personal choice.

Sorry if I seem to be rambling ... this is all so new, and I'm trying to find my way.

 

 

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I am sorry to hear about your mother.  

It is not so hard to get a medical doctor to order a celiac panel -- especially if your father was diagnosed with celiac disease.  Our family GP did not blink an eye when I first asked my daughter to be tested.    If you think your doctor will disregard your legitimate request, you can either fire him or put the request in writing and send it certified (attorneys love documentation!) 

I agree that our doctors should support us.  I have a great GI, but my GP  is pretty clueless when it comes to celiac disease, but she admits it.    She does always order all the lab tests I request.  Perhaps it is because I come in with supporting medical documentation and evidence.  If she was not supportive to my satisfaction, I would find a new doctor.  

Again, you can go gluten free in your own.   Chance are you have celiac disease.    But it is hard.  Really hard if you do not have the support of your family.  That is my concern.  

Are you in the US?  

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Below is copied & pasted from this thread:

 

My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.  

 

There are recommendations on this thread too:

 

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