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Prash

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Hi,

 

A new member here. For years I've suffered multiple symptoms but I've been failed by doctors including gastroenterologists who convinced me that it was all in my head. I continued to try detox, herbal remedies, cleansing etc. hoping to get relief in vain.

Three months ago, absolutely fed up, I got food intolerance test (iGg) done which identified egg, gluten, wheat and possibly dairy as the main triggers. Without thinking, I went ahead and eliminated these (100% gluten and probably 95-100% egg and dairy) as I was desperate. After some terrible withdrawal problems, two months later, I started to get tremendous relief.

 

Then I started to read a bit and it occurred to me that I could be a coeliac. I then ran to the drug store to get a coeliac home test knowing fully well that it will be unreliable since I was already on a gluten free diet for two months. That test came out negative. 

I also ordered an expensive Genetic test from a reputed company which does not depend upon anything whether you are gluten free or not. I got the results last week and to my surprise, I have the gene for coeliac placing me in the second highest risk category 1:10. My gene is DQ2 and Homozygous HLA-DQB1*02. Suddenly it all made sense. Relief from my diet and  positive test made sense.

Now I have to see my doctor and explain the whole thing. I know what he is going to say. Eat gluten so that they can do biopsy and ttg-IGa test. I'm dreading that as I don't want those symptoms again. Anyone in the same boat?

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Fortunately for me my celiac was discovered indirectly and I didn't suffer from symptoms like most celiacs with the exception of becoming anemic. Perhaps ask the doctor how much gluten you need to consume so you can try to keep it to a minimum without jeopardizing the test results.  Just try to remember that it's temporary and you'll manage your way through it. Wish there was an easier way for you. Hang in there!  

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Wow! you were lucky. I suffered for years and years. Useless doctors. Those symptoms also bring up anxiety, depression and self loathing feelings. It is dreadful.

 

I have the appointment next week!! I may decide to not go though with the diagnosis. The treatment is the same after all. 

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Yes i am "lucky" if there is such a thing with celiac lol.  Not sure where you live but the advantage of getting properly diagnosed is that you will need follow up biopsys to ensure that you are healing inside if in fact you are celiac vs  just being intolerant. It's important to know if you are healing sufficiently large inside. I would get the biopsy so you have all information available to you. 

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You do have a tough call to make.  Like Darren, anemia was my main symptom.  I went in for a routine colonoscopy (Yep, I am old) and the GI ordered the celiac blood panel and the endoscopy too.  I had a Marsh Stage IIIB biopsy result. I was shocked.  Why?  Because my hubby had been gluten-free for 12 years.  He went gluten-free per the poor advice (no celiac testing) of my allergist and his GP.  It worked though.  We know gluten makes him sick.  I needed the formal diagnosis because I could not believe that we both would have gluten issues.  I think my diagnosis makes it easier for me to stick to the diet 

Hubby will be the first to tell you that I have had it easier with family, friends,  and medical support.  But that is still not enough for him to go back to eating gluten to get tested.   

Good luck in whatever you decide to do!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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15 minutes ago, Darren said:

Typo on word large above, darn auto type....

?, that drives me crazy!  It is a curse and a blessing!  ?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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44 minutes ago, Darren said:

Yes i am "lucky" if there is such a thing with celiac lol.  Not sure where you live but the advantage of getting properly diagnosed is that you will need follow up biopsys to ensure that you are healing inside if in fact you are celiac vs  just being intolerant. It's important to know if you are healing sufficiently large inside. I would get the biopsy so you have all information available to you. 

Follow up biopsies are not always necessary. If you have persistent problems, then that would be a good reason to do one but not everyone needs one.  I have never had any biopsy because I failed all the blood work by huge numbers and I presented with classic Celiac.  I fit the criteria for diagnosis without biopsy, for those who will have trouble consuming gluten for all testing. If anyone had told me I would have to continue eating gluten for up to 2 months to have a biopsy, it wouldn't happen.  I just get too sick.  It is a tough call but if someone gets really sick from eating gluten and they have the genetics for predisposition to the disease, it's very easy to be compliant to the gluten-free diet.

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Biopsy is the only method to diagnose celiac. If you are in fact celiac Follow ups are recommended because thats the only way to know if you are healing sufficiently inside. In my case since I don't get the common symptoms I will need it to ensure I'm gluten free "enough" or if the healing is delayed due to possible cross contamination issues. To me it's valuable information to ensure I'm staying on the right course. If you are only intolerant then I agree followings are pointless but you don't know you have celiac without initial biopsy.  It's a tough situation for everyone....hopefully they figure a cure out soon...

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14 minutes ago, Darren said:

Biopsy is the only method to diagnose celiac. If you are in fact celiac Follow ups are recommended because thats the only way to know if you are healing sufficiently inside. In my case since I don't get the common symptoms I will need it to ensure I'm gluten free "enough" or if the healing is delayed due to possible cross contamination issues. To me it's valuable information to ensure I'm staying on the right course. If you are only intolerant then I agree followings are pointless but you don't know you have celiac without initial biopsy.  It's a tough situation for everyone....hopefully they figure a cure out soon...

That is old school thought, Darren.  You absolutely do not need a biopsy to prove Celiac Disease but I agree it all goes on a case by case issue.  You must have not heard of Dr. Fasano's criteria for diagnosis without biopsy. 

The five factors Dr. Fasano cites include:

In Dr. Fasano's opinion, if you have everything on the list except for positive biopsy results from the endoscopy, then you can skip the endoscopy.

For those who presented like I did with classic Celiac, it was a no brainer after my blood work came back.  Even docs I have seen after the fact, who were really anal about biopsies, could not dispute my diagnosis after seeing my blood work.  I also look like a the textbook version of a Celiac......petite, short and slender. Most 12 year olds are bigger than I am.

As far as ruling out other conditions, if I had not flourished on the gluten-free diet, then that would be a reason to go in and see what else may be happening but I would not have needed one for a diagnosis. That didn't happen. The gluten-free diet gave me back my life and health and I was down to 92-94 pounds at diagnosis.  I am now 20 pounds heavier and that never happened in my entire life.  That is what they mean by the 5 factor guidelines.....resolution of symptoms and healing. You do not always need to "see" healing on a camera, either. That is for the doctor's benefit. If symptoms resolve completely, you gain weight and your blood labs that showed deficiencies correct after following the diet, guess what?  You are healing!  But I do realize that there are many people who have little enough symptoms that make them think they have no symptoms. Everyone has symptoms as a Celiac.....they may not recognize them as such until after they recover and the problems disappear. Again, every situation can be so different but to say you need a biopsy to prove Celiac is just not correct anymore. Tell that to people who meet the criteria, have the biopsy only to have the doc miss the damaged sections of your intestines. They are then told there is no Celiac, label them as gluten sensitive and they end up even more confused.  That does happen more than people think.

As for a cure, we have one and it's the gluten free diet. Even if they came out with a cure tomorrow, in pill form, I would still never eat gluten again.  I have been doing this for a long time and it's completely the norm for me. I feel great eating this way and that's enough for me. Would it be nice to have a CC pill to take while on vacation? Yes, it would but it is still not necessary. If you learn to read labels correctly and follow the diet without intentional cheating or risk, there is no reason you cannot enjoy a full, healthy life....really!

 

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Well it clarified my situation and i will continue them as my doctor recommends.  I prefer to go through whatever I can to get as much info as possible. Old school or not I know what I have and I know how my recovery is going. Fortunately anemia is gone and vitamin levels back up so its all good.  Thanks for the info though.

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Yeah it is a tough call. I'll try not to swear at my doctors' incompetence. I believe I'm a poster boy for celiac looking at my symptoms and genetic test results placing me in second highest risk category.

 

I just did not even know or even suspected celiac (in fact I did not even know what celiac disease was) three months ago.

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Do you think I should disclose my gene test results to my siblings and urge them to get tested? I have been found in second highest risk category. My symptoms can fill an A4 size sheet but they don't have such chronic symptoms apart from one or two quite visible chronic skin issues which runs in the family tree.

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