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What Should I Do Now?
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38 posts in this topic

I signed up here not long ago after having a positive for the gene testing from EnteroLab in Texas.

One celiac gene, and one non-celiac showing a predisposition for gluten intolerance.

Long story short,......went into the hospital around the seventh of this month.

Doctor had many tests done on me, and a colonoscopy/endoscopy was one of them.

BTW, the hospitalization had nothing to do with my GI issues, he just took care of everything at once.

Finally got the biopsy results back a few days ago. GI doc says I have no signs of active celiac disease, and that I should return to a 100% normal diet.

I had cut out some gluten but certainly not all,.......the doc knew this BTW.

I guess what I am asking is what path does one in my position take? Obviously I have the genes, but a GI doc is telling me it is not active, and may never become active. He also said if I went 100% gluten free that I was asking for a reaction down the road for sure.

His suggestion was to avoid a high gluten diet, but to not quit totally.

Does anyone have suggestions for me, as I would like to confirm/deny this once and for all and go about a normal life.

BTW,......most of the gluten free products I have been using are fine short of the bread. They ALL stink IMHO!!!!!!!!

Fortunately I am not a big bread eater, but if I need to stay on this I will need to learn to bake something myself.

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What led you to think you might be celiac to begin with? I am assuming you must have had symptoms or you wouldn't have done any testing. If you were gluten free or gluten light then of course your tests would be negative. Even on a full gluten diet some of us have false negative tests. I don't agree with the doctor that if you are gluten free that insures you will react to gluten down the road. There are a folks who have gone gluten free for loved ones and they don't get sick when they eat gluten unless they are having a problem with it to begin with. If I were you I would stick with the diet if it relieved the symptoms that caused you to suspect celiac before you did the enterolab testing.

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What led you to think you might be celiac to begin with? I am assuming you must have had symptoms or you wouldn't have done any testing. If you were gluten free or gluten light then of course your tests would be negative. Even on a full gluten diet some of us have false negative tests. I don't agree with the doctor that if you are gluten free that insures you will react to gluten down the road. There are a folks who have gone gluten free for loved ones and they don't get sick when they eat gluten unless they are having a problem with it to begin with. If I were you I would stick with the diet if it relieved the symptoms that caused you to suspect celiac before you did the enterolab testing.

I had been losing weight without trying,.....gas,bloating,abdominal cramps, and diarrhea that came and went. A new doctor I went to was the one that ordered the test. He is a 'functional medicine' doctor BTW.

My GI doc said I had IBS and GERD,.......irritable bowel syndrome, not the inflammatory type. This was about 5 years ago.

I have been on Nexium on and off since then.

My change in gluten intake was minimal since I don't eat a lot of bread. Main change was in gluten-free pastas. GI doc said it would still show up as a problem.

In all honesty the only difference I can note at this point is I have far less loose stools. I still cramp and get gas/bloating although it MIGHT be slightly less since I have cut back on gluten.

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I had been losing weight without trying,.....gas,bloating,abdominal cramps, and diarrhea that came and went. A new doctor I went to was the one that ordered the test. He is a 'functional medicine' doctor BTW.

My GI doc said I had IBS and GERD,.......irritable bowel syndrome, not the inflammatory type. This was about 5 years ago.

I have been on Nexium on and off since then.

My change in gluten intake was minimal since I don't eat a lot of bread. Main change was in gluten-free pastas. GI doc said it would still show up as a problem.

In all honesty the only difference I can note at this point is I have far less loose stools. I still cramp and get gas/bloating although it MIGHT be slightly less since I have cut back on gluten.

Celiac and gluten intolerance are autoimmune disorders. Your body makes antibodies to gluten and even a very small amount of gluten will keep those antibodies active. To really get benefit from the diet you can't just cut back on gluten you have to eliminate it completely. That means avoiding wheat, rye, barley and oats and taking care to prevent cross contamination, like not using a toaster that has been used for gluten breads to toast your gluten-free bread or using a strainer for gluten-free pasta that has been used for wheat pasta.

If you go to the home page here you can find lists of what is allowed and what to avoid.

Only by eliminating gluten totally can you really heal and stop the antibody reaction.

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Thanks for the info.

I guess what I am getting at is even though I carry the genes, my GI doc says I have no signs of anything being active in me. My colonoscopy was totally clean with no polyps, and the biopsy from the endoscopy was negative. I am aware that the lower intestine is not involved BTW.

Wondering if I should go back to a 100% normal diet for a few months and then do whatever blood tests are available?

I guess there are the same false positives, and negatives in those tests as there are in the endoscopy biopsies though.

From what I have done so far I see that being gluten free is not that hard, but obviously I don't want to do it if it is not necessary. For one thing the gluten-free stuff is a lot more expensive, and as I have said several times, the breads stink,......at least in my opinion. Everything else I can handle just fine.

I guess my other option is to simply do it 100% for a few months and see what happens.

As with most medical testing, nothing is a sure thing it seems.

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False positives are extremely rare. Like astronomically rare. And the Celiac tests aren't going to tell you if you have non-Celiac gluten intolerance.

As far as gluten-free "stuff" being expensive. It doesn't need to be. If you eat naturally gluten-free foods: meat, poultry, fish, fruits, vegetables, nuts; you're not paying more. I spend less on food now than I did pre-diagnosis because I'm not eating processed foods. The gluten-free foods are not a requirement on this diet.

As Raven said, the best way to determine whether or not you have a problem with gluten is to just cut it out. Yes, it's inconvenient but it's worth it if your symptoms continue to be an issue. Unfortunately, there are just some things doctors and tests and procedures can't tell us and we have to find them out on our own.

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False positives are extremely rare. Like astronomically rare. And the Celiac tests aren't going to tell you if you have non-Celiac gluten intolerance.

As far as gluten-free "stuff" being expensive. It doesn't need to be. If you eat naturally gluten-free foods: meat, poultry, fish, fruits, vegetables, nuts; you're not paying more. I spend less on food now than I did pre-diagnosis because I'm not eating processed foods. The gluten-free foods are not a requirement on this diet.

As Raven said, the best way to determine whether or not you have a problem with gluten is to just cut it out. Yes, it's inconvenient but it's worth it if your symptoms continue to be an issue. Unfortunately, there are just some things doctors and tests and procedures can't tell us and we have to find them out on our own.

Yes, you are correct in terms of whole foods, and I eat a lot of them.

I am talking about the pastas, crackers, and convenience type foods that I DO use on occasion.

I guess I need to learn more of what I speak of as I don't even know what type of test the GI guy did with the endoscopy biopsy. Are they looking for Celiac alone, or damage to the villi in the small intestine? I would ASSUME that damage would show whether it was from Celiac disease or simple gluten intolerance.

All I really know at this point is the results of the gene test, and they are supposed to be very accurate.

Also, I think what my doc was trying to tell me was that if I went 100% gluten free when I don't need to, that I may 'hypersensitize' my body to gluten and get a reaction if I changed my mind later. A little of that actually makes sense to me as I tend to believe one of the reasons we have so many children in this country with allergy issues is due to lack of exposure to virtually anything. Most kids don't play outside much anymore and get exposed to what even someone my age did.

It is all very confusing needless to say.

What blood tests are most reliable? That is all I have not had done at this point.

Thanks to all!

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If you don't have a problem with gluten, going gluten-free won't sensitize you to it. If you do have a problem, you shouldn't be eating it anyway.

As far as the endoscopy, the doctor needs to take at least 6 biopsies from different locations (damage can be patchy) and then the samples are looked at under a microscope. You're correct in that he's looking for blunted or flattened villi which would indicate Celiac. But non-Celiac gluten intolerance wouldn't necessarily show villi damage. You could have negative blood tests and negative biopsies and still be gluten intolerant. That's why so many of us around here push people to try the diet anyway.

I can't help you with the blood testing but someone else will answer that question. The only issue with gene testing is that, while it's accurate in its results, just because you have the gene doesn't mean you have Celiac and vice versa: it's possible to have Celiac without the gene. And that says nothing about non-Celiac gluten intolerances.

There are some inexpensive gluten-free pastas. I've eaten Heartland Pasta from Walmart with no issue

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Shopgirl,.....thanks much for your time.

What you say makes a lot of sense, and being as I have already eliminated a large portion of gluten from my diet I think I will simply finish it and go 100% for 2 to 3 months.

Being as I seemingly do not have 'villi' damage, I would assume I should see a noticeable difference within that timeframe?

Actually I SEEM to already have noticed a slight difference as I stated at the start of this thread,......maybe that should be an indicator to me.

I think I am putting too much faith into the results from the GI doc which could very easily be a false negative, or as you said he may not have taken enough samples or in the right spots.

I don't do popcorn due to the fact that my mother had part of her sigmoid colon removed last year as a result of Diverticulosis that turned into Diverticulitis. Her GI surgeon told us that 90% of this issue is caused by folks that eat a lot of popcorn, and nuts,.......not from the small seeds in fruit and veggies.

She used to be a big popcorn eater, and to a lesser degree nuts as well. Not trying to make you nervous BTW!

I had no signs of this in my colonoscopy and I want to keep it that way as I seem to follow my mother a lot in terms of health issues.

I guess I will buy a bread machine, as I just can't tolerate the gluten-free bread that is available around here. I have tried 4 different brands and they all are horrible in my opinion. I have found some bagels and english muffins that I consider edible, and that is what I will use for burgers I guess unless I can find a good recipe for that as well.

Thanks much once again.

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Your thread is titled "What should I do now?" and I agree with the others, that now you need to try the diet very strictly. It should answer the question of whether or not you tolerate gluten. Keep in mind that you may also have a problem with lactose and should avoid that to start with too and buy one of those 'expensive' almond, hemp or rice milks (but not Rice Dream which is gluten contaminated). :)

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Your thread is titled "What should I do now?" and I agree with the others, that now you need to try the diet very strictly. It should answer the question of whether or not you tolerate gluten. Keep in mind that you may also have a problem with lactose and should avoid that to start with too and buy one of those 'expensive' almond, hemp or rice milks (but not Rice Dream which is gluten contaminated). :)

I have already had some of the almond milk products,.....I think they are good myself.

I really don't drink milk much at all, nor eat cold cereal per se. My weakness in that area is cheese

I just read all of the things you have to avoid in your sig line,.......wow!

I'm sorry you have all of those issues.

Funny thing is I am not like most Americans in this day and age. I largely eat healthy,....not overweight,......lipids are great,......I eat mostly what I call whole foods. I replaced beef with grass fed bison over a year ago and now I can't stand the taste of regular beef.

I am one of those strange folks that eats to live, not lives to eat. If I need to do this I will be able to deal with it I am sure. Only new thing will be baking bread myself,........some of my friends might wonder about me! LOL

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Only new thing will be baking bread myself,........some of my friends might wonder about me! LOL

Or your kitchen could become everyones favorite place to be.

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I don't eat much bread myself. Maybe every few months or so I will get a loaf of gluten-free bread. But otherwise I don't eat it. I do get Trader Joe's brown rice tortillas sometimes to make wraps. There are also Food For Life brown rice tortillas at Whole Foods but I prefer Trader Joe's.

There is a recipe for microwave buns in the recipe section posted by Lonewolf a while back.

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I don't eat much bread myself. Maybe every few months or so I will get a loaf of gluten-free bread. But otherwise I don't eat it. I do get Trader Joe's brown rice tortillas sometimes to make wraps. There are also Food For Life brown rice tortillas at Whole Foods but I prefer Trader Joe's.

There is a recipe for microwave buns in the recipe section posted by Lonewolf a while back.

Yes,....I would love to find some decent wraps for sandwiches.

I tried some large Mission white corn ones, but they crack to pieces and also make your lunch taste like corn.

Unfortunately I do not have any Whole Foods around me, only Publix, Sweetbay, and Winn-Dixie. I have been unable to find any wraps that are not corn, or flour.

Do the brown rice tortillas fold nicely like a flour one does?

Often I have to take my lunch with me and do not have access to a microwave or a toaster oven,.....that's why the gluten-free bread I have tried doesn't work for me. It's edible I guess if toasted right before you use it.

Short of that,......yuck!

I just dumped the last I had in the woods by my house. Figured maybe the animals might eat it!

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You can also use rice papers for wraps. Just soak them in warm water for five minutes and they become soft and pliable. They are not big but you can make more than one. If you are wrapping something chunky you can double them up.

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The rice wraps will crack too, but you can fix that by running water over them before microwaving for 30 seconds. The water treatment will help the corn tortillas also, as will heating them in a pan.

Here is a link the microwave bread recipe I mentioned:

Easy, Yummy Bread In Minutes An experiment gone right!

You c also make gluten free pancakes and use them as bread. Just fry up a bunch and freeze them.

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I signed up here not long ago after having a positive for the gene testing from EnteroLab in Texas.

One celiac gene, and one non-celiac showing a predisposition for gluten intolerance.

Long story short,......went into the hospital around the seventh of this month.

Doctor had many tests done on me, and a colonoscopy/endoscopy was one of them.

BTW, the hospitalization had nothing to do with my GI issues, he just took care of everything at once.

Finally got the biopsy results back a few days ago. GI doc says I have no signs of active celiac disease, and that I should return to a 100% normal diet.

I had cut out some gluten but certainly not all,.......the doc knew this BTW.

I guess what I am asking is what path does one in my position take? Obviously I have the genes, but a GI doc is telling me it is not active, and may never become active. He also said if I went 100% gluten free that I was asking for a reaction down the road for sure.

His suggestion was to avoid a high gluten diet, but to not quit totally.

Does anyone have suggestions for me, as I would like to confirm/deny this once and for all and go about a normal life.

BTW,......most of the gluten free products I have been using are fine short of the bread. They ALL stink IMHO!!!!!!!!

Fortunately I am not a big bread eater, but if I need to stay on this I will need to learn to bake something myself.

Hi Marc,

I can't believe a GI doctor, knowing you have a celiac gene is telling you to eat gluten. :unsure:

I offer you this simple explanation from

www.celiaccenter.org.

celiac disease is a 3-pronged fork:

1. you must inherit the gene,

2. consume gluten, and

3. have the disease triggered. Common triggers may include stress, physical trauma (surgeries, pregnancy, etc.), and viral infections.

If you have the gene, and you continue to consume gluten, well....um....I think you see where this MAY be headed...

Danna Korn wrote in her book that 1/3 of people with the gene do not develop celiac. Not sure how you feel about those odds. ;)

In any case, you do what YOU think is best. Everyone on here is going to say the same thing to you...there are MANY NEG biopsies and blood panels, but unfortunately, plenty of people seriously ill from gluten nonetheless.

Take good care of yourself!!

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IrishHeart,......somehow I missed your response.

I have gone 100% right after I started this thread. No difference yet that I can tell anyway.

This was the text of my genetic testing results:

"Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe."

From this it appears that BOTH of my parents passed one to me,.....gee thanks!

Funny thing is that neither one of them have any issues that they are aware of with gluten. I do not have much contact with my biological father, but I have asked him about it.

What I have decided to do is stay 100% gluten-free for 2-3 months, and then return to my previous diet for a period of time. I am thinking that I should have some type of a noticeable difference after making the switch, and I will use that to make my final judgment as to whether I will continue or not.

As of now there is no change from what I said previously. Stools are better to a fair degree, but I still get a lot of bloating and some cramps. My GI doc says that is coming from IBS and not from eating gluten.

Don't get me wrong,......he knows that celiac disease is real, and believes my gene testing to be accurate. He just does not believe I have it at this point. Also said I will probably never get it since I have no signs at almost 50 years of age.

I guess he thinks I am in that 1/3 that you mentioned.

If any of you great folks would like to chime in with your thoughts of my plan, feel free!

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Hi Marc,

(1) You may want to read up on silent celiac.

(2) It takes 6 months to a year for people to see healing. 2-3 months may not be enough.

It's your call, obviously, but the celiac gene, (and you have BOTH) predisposes you to celiac. It's not just about stomach issues---you are open to a whole range of crippling autoimmune disorders, like diabetes and kidney disease. I would not wish the horrible chronic pain and debilitating symptoms I have on anyone.

If years ago, I had definitive test results right in front of me that told me I would be as ill as I am right now and to AVOID that, all I had to do was not eat gluten, I could have had a different life, including children ---as they link miscarriages to celiac, too. I am in excruciating pain 24/7 and my life fell apart when my celiac was "triggered".

I was told I "ONLY" had "IBS" too....suffered with it for years. Told it was okay to eat gluten too-(I asked repeatedly)--and I went so far downhill, losing 90 lbs, muscle mass, my hair, my ability to think and speak clearly....living in the bathroom, developing insomnia and muscle/joint pain so bad I told my husband I'd rather die than live like this...I thought I was dying before going gluten-free and stopping the madness--I was sooo sick and incapacitated. My PC doctor was the one who finally said--after I went back ONE MORE TIME... OMG! YOU are right--you have to stop eating gluten right now!! and dairy too!!

....The question is...WHY is the bowel "irritable"....something makes it "irritable"!! It's called gluten.

Still having bloating after going gluten-free? It's probably dairy. The villi handle those enzymes too and if your gut is compromised, dairy is a problem as well.

I'm just saying.....just my humble opinion. YOU KNOW BEST, but I hate to see you get any worse.

Best luck!!

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Hi Marc,

(1) You may want to read up on silent celiac.

(2) It takes 6 months to a year for people to see healing. 2-3 months may not be enough.

It's your call, obviously, but the celiac gene, (and you have BOTH) predisposes you to celiac. It's not just about stomach issues---you are open to a whole range of crippling autoimmune disorders, like diabetes and kidney disease. I would not wish the horrible chronic pain and debilitating symptoms I have on anyone.

If years ago, I had definitive test results right in front of me that told me I would be as ill as I am right now and to AVOID that, all I had to do was not eat gluten, I could have had a different life, including children ---as they link miscarriages to celiac, too. I am in excruciating pain 24/7 and my life fell apart when my celiac was "triggered".

I was told I "ONLY" had "IBS" too....suffered with it for years. Told it was okay to eat gluten too-(I asked repeatedly)--and I went so far downhill, losing 90 lbs, muscle mass, my hair, my ability to think and speak clearly....living in the bathroom, developing insomnia and muscle/joint pain so bad I told my husband I'd rather die than live like this...I thought I was dying before going gluten-free and stopping the madness--I was sooo sick and incapacitated. My PC doctor was the one who finally said--after I went back ONE MORE TIME... OMG! YOU are right--you have to stop eating gluten right now!! and dairy too!!

....The question is...WHY is the bowel "irritable"....something makes it "irritable"!! It's called gluten.

Still having bloating after going gluten-free? It's probably dairy. The villi handle those enzymes too and if your gut is compromised, dairy is a problem as well.

I'm just saying.....just my humble opinion. YOU KNOW BEST, but I hate to see you get any worse.

Best luck!!

Wow,.....thank you very much for telling me your story.

I am going to stick with it much longer than planned I guess.

While I am a 49 year old male, I have some of the same issues as you do. Used to be 6 feet tall on the nose and weighed right at 190 pounds,.....virtually no fat, but not a muscle-head either.

I have lost an inch due to my bad back, and also have lost about 20 pounds for no reason over the last year. My muscle mass is probably the main reason as I have lost quite a bit, especially in my lower body.

I also have quite a bit of joint pain as well, but I guess I have simply attributed it to my job as an HVAC contractor.

I sleep OK most times, but have noticed something else you mentioned,......my mental focus is just not there all the time. Something has changed in that aspect of my life for sure, but I thought it was just getting a bit older.

I have been through a boat load of testing in 2010 with nothing of any real consequence found. I tested quite low on Vit D level and have to take a supplement for awhile. My 'functional med' doc also notified me that my testosterone level was dropping but was not yet at a level where treatment was needed.

You have definitely given me something to think about with your words. I certainly hope that you get to feeling much better and get your life back 100%.

BTW,.....I am largely of Irish descent myself if your name here indicates anything.

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See, Marc...you have what are called "extra-intestinal" signs of celiac!! The joint pain, the loss of weight (unintentional), hormonal disturbance--not just in women, but men as well---and the brain function? Big time on here!!! That was the worst for me--I thought I was losing my mind (but knew it had to be something else!!!)

ok, I am posting you a list of symptoms, because honestly, you are exhibiting the stuff that the GI docs overlook and only a savvy practitioner will see as important symptoms.

BTW...The incidence of celiac in the Irish is HUGE!!

Please read and see if any of these seem like you...

CELIAC DISEASE

Celiac disease (celiac disease) is also referred to as a gluten sensitive enteropathy (GSE), gluten intolerance, or celiac sprue. It is considered to be the most under-diagnosed common disease today, potentially affecting 1 in every 133 people in the USA. It is a chronic, inherited disease, and if untreated can ultimately lead to malnutrition. Gluten intolerance is the result of an immune-mediated response to the ingestion of gluten (from wheat, rye, and barley) that damages the small intestine. To learn more about the recently published multi-center prevalence study of celiac disease visit, www.celiaccenter.org.

Cause:

celiac disease is a 3-pronged fork:

1. you must inherit the gene,

2. consume gluten, and

3. have the gene triggered. Common triggers may include stress, physical trauma (surgeries, pregnancy, etc.), and viral infections.

Facts:

* Celiac disease was once thought of a rare childhood disease with only gastrointestinal (GI) symptoms. It is actually common, can occur at any age, and often presents as extra-intestinal.

* It was once mistakenly believed that one would "grow out" of the condition. In actuality, the disease is permanent and damage to the small intestine will occur every time you consume gluten, regardless if symptoms are present.

* Approximately 1 in 20 first-degree relatives of diagnosed celiacs could have celiac disease triggered in their lifetime.

Symptoms:

Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine.

Signs that you could have celiac disease include:

* a first degree relative (parent, child, sibling) with celiac disease.

* a second degree relative (aunt, uncle, cousin) with celiac disease.

INTESTINAL SIGNS

* lactose intolerance

* excessive gas

* indigestion (dyspepsia)

* reflux (GERD)

* diarrhea

* constipation

* stearorrhea (oily or greasy stools)

* pale, foul-smelling, bulky stools

* abdominal pain

* abdominal distention/bloating

* irritable bowel syndrome (IBS)

EXTRA-INTESTINAL SIGNS-there are hundreds; these are most prevalent

* an inability to concentrate/fuzzy-minded

* bruise easily, bleed easily -including nose bleeds

* persistent itchy skin and/or rash

* mouth sores or cracks in the corners of the mouth

*dry mouth, burning tongue/mouth or dry eyes

* muscle cramping

* loss of muscle mass

* night blindness

* tooth enamel defects (discoloration, tooth enamel loss)

* hormonal fluctuations

* lack the desire to eat; food tastes terrible

* vitamin deficiencies

* iron deficiency anemia, unexplained

* a decreased ability for blood to clot

* generalized weakness and extreme fatigue

* drastic weight loss OR inability to lose weight

* bone pain/joint pain

* easily fractured bones (osteoporosis, osteopenia)

* abnormal or impaired skin sensation (parasthesia)

* burning, prickling, itching or tingling skin

* unexplained edema

* short stature/growth retardation

* amenorrhea (missed menstrual periods)

* unable to conceive/impregnate

* multiple unexplained miscarriages

* multiple chemical sensitivity; allergies;other food intolerances

* chronic fatigue syndrome

* depression

* anxiety

No Symptoms - some people have mild celiac disease without noticeable symptoms.

Non-specific symptoms - some people get mild but unclear symptoms.

Diagnosis:

Blood tests

* Anti-tissue transglutaminase (tTG-IgA). This screening test is commonly used when an individual is in a risk group for celiac disease, whether or not he/she has symptoms. This test is usually the one offered for celiac screening events, as it is the most sensitive test available.

* Total Serum IgA to test for IgA deficiency (this health condition can affect accuracy of antibody test)

* Anti-endomysial antibody test (EMA-IgA). EMA-IgA are very specific for celiac disease but they are not as sensitive as the tTG-IgA. Some people with Type 1 Diabetes, Hashimoto

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Don't get me wrong,......he knows that celiac disease is real, and believes my gene testing to be accurate. He just does not believe I have it at this point. Also said I will probably never get it since I have no signs at almost 50 years of age.

Sorry, I can't comment on the gene testing since I never had it done nor do I know anything about it.

But I can say that celiac knows no age limit. I was much older than that when I was diagnosed.

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IH thank you so much for all of that info in one place!

Like most things I have a number of those symptoms, but certainly not all,.....I won't waste bandwidth saying which ones other than this.

I have heard about the anemia issue previously, but I am opposite in terms of having higher iron levels. I have been tested for hemochromatosis but it came back negative and my levels have dropped back somewhat.

Only reason I mentioned it is I have been told that malabsorption issues are common with celiac and a lot of folks are anemic.

I also had 'fecal' tests done that showed I had totally normal absorption/digestion. That might be too much info right there! :D

It's too bad you can't get the gene test in NY yourself, but it seems you already know what the results would be.

All of this is so confusing when we must play doctor for ourselves. Considering how things are in the Med community today though I would imagine it has saved a number of lives.

Thanks once more and I hope you continue to improve!

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Mine "blossomed" for real at 51...under extreme stress. I agree w/Sylvia--it's not about age. It is just progressive. I think, despite the inconvenience, it is better to be DXed as a child and spared a lifetime of illness. They test the children in Italy now--that's wise thinking!

Doctors were useless to me. If I had continued to listen to them, I'd be in my hoverround, doped up on pain meds and antidepressants, tranquilizers, still having daily diarrhea, nausea-- and incoherent, depressed and anxious and jumping out of my skin, thinking death would be better.

Instead, I am writing to you and making perfect sense. :lol: (I hope! LOL LOL)

I am my own best advocate. You be yours, too!

Okay, well, I gave you all I know.... LOL LOL

Best luck!

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Mine "blossomed" for real at 51...under extreme stress. I agree w/Sylvia--it's not about age. It is just progressive. I think, despite the inconvenience, it is better to be DXed as a child and spared a lifetime of illness. They test the children in Italy now--that's wise thinking!

Doctors were useless to me. If I had continued to listen to them, I'd be in my hoverround, doped up on pain meds and antidepressants, tranquilizers, still having daily diarrhea, nausea-- and incoherent, depressed and anxious and jumping out of my skin, thinking death would be better.

Instead, I am writing to you and making perfect sense. :lol: (I hope! LOL LOL)

I am my own best advocate. You be yours, too!

Okay, well, I gave you all I know.... LOL LOL

Best luck!

Yes,......you are making perfect sense!

I am going to stick with this for a much longer period of time than I had planned due to your responses.

Hopefully someday I may be able to answer a question for you?

I doubt it! :rolleyes:

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