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Negative Test Results. Do I Have Celiac Disease?


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#1 superman

 
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Posted 12 April 2010 - 06:54 AM

Hello everyone,

This is my first post, but I have been reading a lot of posts on this forum over the past few days. I'm going to write down my medical history in brief. I'll be very grateful for any help/advice.

I am a 27 year old male, and I used to weigh 157 kgs (345.4 lbs) a couple of months back. I was in my worst shape and have been facing the following symptoms for the last 7 years, which have only got worse with time:

# Bloating, undigested food, really bad smelling feces, stomach pain, acidity.
# Constipation and Diarrhea
# Low Total Testosterone for my age: 489 ng/dl
# Low Sperm count for my age: 69 million sperms
# Very low libido
# Erectile dysfunction
# Lacking the feeling to succeed
# Chronic Depression and mood swings
# Trouble concentration
# Chronic fatigue
# Difficulty in remembering/recalling words and names
# Sleepiness (I sleep 12+ hours a day)
# Fatigue and sleepiness after moderate physical activity even on a low carb diet
# Confusion in noisy/crowded places
# Discomfort and slight-pain below right rib cage and under the left rib cage for 2-3 hours after eating and also at random times.
# Knee pain
# Mildly aching muscles and cramps in legs at night
# Severe Upper Back Pain with mild spondalitis and mild scoliosis
# Chronic non bacterial prostatitis, constant pain in penis, and severe pain in penis and pelvic region during sex
# Light sensitive eye sight, eye pain, and bubbles floating around frequently
# Hair Loss (Diffused and Adrogenic Alopecia)
# Recurrent skin infections
# Severe Folluculitis
# Recurrent respiratory infections when I expose myself to a dusty environment and mild cold all year round
# Malabsorption (I'm deficient in Vitamin D and B12)

So I finally made and effort and lost 18 kgs (39.5 lbs) a few months back. However, rather than feeling good my symptoms have only got worse.

I stumbled upon an article regarding gluten sensitivy and Celiac disease, and found out that many people who suffer from it also share somewhat the same symptoms like me. I have always been eating wheat and bread. So I went off gluten for 6 days and felt a little bit better. I'd say there was a 50% improvement in my pelvic pain and 20 to 30% improvement in my mental state and fatigue. The smell in my feces reduced by 80%. And my folluclitis disappeared.

So I decided to take an anti-body blood test for Celiac. I consumed a lot of wheat for a week and then took the test. Received the results yesterday. Here they are:

Endomysial Antibody-IgA (1:10) (EMA-IgA): NEGATIVE
Gliadin Antibody-IgA: 2.0 RU/ml
Gliadin Antibody-IgG: 3.3 RU/ml
tTG-Tissue transglutaminase-IgA: NEGATIVE (BELOW 0.2 AU/ml)
Total IgA Level: 319 mg/dl

I'm confused, as the Gliadin Antibody IgA and IgG and tTg-IgA seem to be below the Reference Range & Units. Do I have gluten sensitivy or Celiac Disease?

Also, my total IGA level seems to be on the higher side. My White Blood Cell count is 9800 and Eosinophils is 7%. My CRP is 15 and ESR is 28. Should I be concerned?

Should I get an ANA or any other antibody test done to see if I am developing or have some other autoimmune disease which might be causing all these symptoms?

I don't have diabetes, but my sugar levels used to be 120 fasting and below 200 post meal for a few years, especially when I used to have the most severe episodes of stomach pain and other stomach related problems. This however corrected by itself within a few years. These days my sugar levels are 100 fasting and below 135 post meal. Should I get tested for pancreatic antibodies?

My mom suffers from hypothyroidism. My T4, T3, and TSH levels are normal, however I put on weight easily. Should I get tested for thryoid antibodies as well?

I live in India. And it's really frustrating to have visited over 7 MDs and 12 specialists in the last 7 years, and all of them saying that my weight is the main culprit. Maybe it's true to a certain degree. But the issues I am facing have forced me to quit my job as I have lost my ability to handle stress, focus on work and work for long hours the way I could when I was in my teens. So there is definitely something going on here, other than my weight, which is affecting all aspects of my life.

I feel the docs here are not in touch with the latest findings in international medical community, when it comes to treating chronic conditions. However, to give them some credit, they are really good at surgery. And they have indeed suggested me to undergo a gastric bypass surgery countless times. I proved them wrong by losing all that weight in 3 months, and I'm shedding even more after giving up gluten! I don't feel hungry all the time any more!
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#2 WheatChef

 
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Posted 12 April 2010 - 01:44 PM

Personal feelings of gastric bypass surgery aside, those blood-glucose levels were pretty high and even now that you've got them "corrected" they're still high. A reading of 125 on more than one occasion means you have diabetes so unless you're just averaging your results there you were skirting dangerously close to being a full blown diabetic. A constant fasting blood glucose of 100 or above is still pre-diabetes however and shows you're definitely having some insulin issues. A good thing to do would be to continue charting your blood glucose levels as you continue with the gluten-free diet.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#3 superman

 
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Posted 13 April 2010 - 04:18 AM

Personal feelings of gastric bypass surgery aside, those blood-glucose levels were pretty high and even now that you've got them "corrected" they're still high. A reading of 125 on more than one occasion means you have diabetes so unless you're just averaging your results there you were skirting dangerously close to being a full blown diabetic. A constant fasting blood glucose of 100 or above is still pre-diabetes however and shows you're definitely having some insulin issues. A good thing to do would be to continue charting your blood glucose levels as you continue with the gluten-free diet.


Hi WheatChef,

Thanks for your reply.

My fasting blood glucose levels were 125ish a couple of years back when I used to have those episodes of stomach pain or if I had fever or some kind of infection. I used to weigh much less back then, than I weigh today. So I'm confused as to why my sugar levels were so high back then? Maybe my small intestines were absorbing food efficiently back then?

Later for a couple of years my fasting glucose levels would be between 105 and 110 and post-meal would be between 140 and 170.

I have been monitoring my glucose levels regularly for the last 8 months since I started my weight loss efforts, and they further come down to fasting: less than 110 and post-meal: less than 135.

Can this be due to malabsorption due to my stomach/digestion problems? Btw, my thyroid levels, including TSH are normal, and I still tend to put on weight even if I eat moderate amounts of carbs or junk food. So I guess I am absorbing carbs efficiently then. I'm confused. But I'm also happy that my glucose levels have improved, although there is a long way to go as you have said.

Btw, can anyone help me to interpret my Celiac disease blood test report that I have posted above? Thanks.
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#4 superman

 
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Posted 13 April 2010 - 04:23 AM

Personal feelings of gastric bypass surgery aside, those blood-glucose levels were pretty high and even now that you've got them "corrected" they're still high. A reading of 125 on more than one occasion means you have diabetes so unless you're just averaging your results there you were skirting dangerously close to being a full blown diabetic. A constant fasting blood glucose of 100 or above is still pre-diabetes however and shows you're definitely having some insulin issues. A good thing to do would be to continue charting your blood glucose levels as you continue with the gluten-free diet.


P.S.: In my recent post-meal glucose tests I have been consuming a 75 gram glucose solution 2 hours prior to the testing.

By the way, are there any other tests besides glucose testing to rule out Type II diabetes?
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#5 WheatChef

 
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Posted 13 April 2010 - 10:04 PM

Diabetes type II just means that either your body isn't producing enough insulin or your cells aren't responding enough to the insulin (insulin resistance). Technically with multiple testings at 125 or above for fasting level then I believe you technically had diabetes or at least a level that would cause them to do multiple post-meal tests to determine diagnosis. The fact that it has gone down in the past year(s) is very good however as you can see it's still a bit high. The post-meal numbers you described having a year or so ago, 140-170, is well within the range of pre-diabetes. Your current post-meal numbers however are pretty decent and so you at least know that your liver is responding appropriately to the introduction of carbs into your system.

I imagine you'd need some amazingly severe damage to your system to prevent absorption of carbohydrates. In general they're pretty much the easiest thing to get into your system (unfortunately) and since celiac often times presents itself along with diabetes you would not expect to see poor carb absorption just from the damage caused by celiac disorder.

As far as the blood panel goes, you mention RU/ml, I was under the impression that all of those tests are reported in absorbance units (AU) and a reading unit (RU) would be quite a different result I believe. From what I can tell it's also a severely outdated term. Am I misreading this, is it a typo or did they run some weird tests on you? Did the test results come with a specific range from the lab itself or are you using a range from somewhere else?
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#6 superman

 
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Posted 18 April 2010 - 10:41 PM

Diabetes type II just means that either your body isn't producing enough insulin or your cells aren't responding enough to the insulin (insulin resistance). Technically with multiple testings at 125 or above for fasting level then I believe you technically had diabetes or at least a level that would cause them to do multiple post-meal tests to determine diagnosis. The fact that it has gone down in the past year(s) is very good however as you can see it's still a bit high. The post-meal numbers you described having a year or so ago, 140-170, is well within the range of pre-diabetes. Your current post-meal numbers however are pretty decent and so you at least know that your liver is responding appropriately to the introduction of carbs into your system.

I imagine you'd need some amazingly severe damage to your system to prevent absorption of carbohydrates. In general they're pretty much the easiest thing to get into your system (unfortunately) and since celiac often times presents itself along with diabetes you would not expect to see poor carb absorption just from the damage caused by celiac disorder.

As far as the blood panel goes, you mention RU/ml, I was under the impression that all of those tests are reported in absorbance units (AU) and a reading unit (RU) would be quite a different result I believe. From what I can tell it's also a severely outdated term. Am I misreading this, is it a typo or did they run some weird tests on you? Did the test results come with a specific range from the lab itself or are you using a range from somewhere else?


Hi WheatChef,

Sorry for the delayed reply. I was out of town.

RU/ml isn't a typo. The lab has used this unit for the AGA-IgA and AGA-IgG tests only. But they have used AU/ml for the tTG-IGA test.

I searched online for a RU/ml to AU/ml calculator, but couldn't find one. There isn't much information on RU (Rack Unit) either. Anyway, I'm attaching photos of the lab reports. They have reference ranges and detailed info on them.

Endomysial Antibody-IgA

Posted Image

Gliadin Antibody-IgA

Posted Image

Gliadin Antibody-IgG

Posted Image

tTG-IgA

Posted Image

Total IgA

Posted Image

I also got myself tested for thyroid antibodies. Following are the results:

Anti Microsomal Antibody (TPO): 1.1 U/ml (Reference range: 0 - 60)
Anti Thyrogloubulin Antibody (ATG): 20.1 U/ml (Reference range: 0 -150)

Any idea what these low levels of antibodies for Celiac and Thyroid tests mean?

I have also got myself tested for ANA (Antinuclear Antibodies). I should receive the report in a day or two.

Thanks for the info on glucose levels. I got a complete diabetes checkup done after reading your post. Following are the results:

HbA1c: 5.7%
Blood Glucose Fasting (11.5 hours fasting): 99 mg/dl
Blood Glucose (2 hours after consuming 75 grams glucose drink): 145 mg/dl
Insulin Fasting: 25.30 uIU/ml
Insulin Post Prandinal (2 hours after consuming 75 grams glucose drink): 137 uIU/ml
Microalbumin, urine: 8.1 ug/mg of creatinine (Normal range is upto 30 ug/mg of creatinine)
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#7 ravenwoodglass

 
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Posted 19 April 2010 - 02:23 AM

Your A1C was in normal levels. This is a good indication the your not diabetic. Some of us will have elevated BS levels whenever we are ill or glutened, that is normal.
As to the negative blood work for celiac well.... read my signature and you will see what showing up negative, like 20% do, did to my body because doctors relied on the test as absolute proof that I was not celiac. Turns out I am.
Unless you are going to have an endo done I would get on the diet strictly. Also you mention being able to lose weight gluten free. If you are not actively consuming the amount of gluten folks do on a full gluten diet those tests will be negative. If the diet has helped you I would go back to it and stay on it.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 superman

 
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Posted 19 April 2010 - 02:55 AM

Your A1C was in normal levels. This is a good indication the your not diabetic. Some of us will have elevated BS levels whenever we are ill or glutened, that is normal.
As to the negative blood work for celiac well.... read my signature and you will see what showing up negative, like 20% do, did to my body because doctors relied on the test as absolute proof that I was not celiac. Turns out I am.
Unless you are going to have an endo done I would get on the diet strictly. Also you mention being able to lose weight gluten free. If you are not actively consuming the amount of gluten folks do on a full gluten diet those tests will be negative. If the diet has helped you I would go back to it and stay on it.


Hi Ravenwoodglass,

Thanks for replying. I read your signature. And I'm really sorry for your loss.

Glad to know I'm not a diabetic. I'm doing everything possible to lose weight and keep my sugar levels under 110 mg/dl one hour after meals.

I was consuming lots of gluten before taking the Celiac blood tests. I got the tests done by myself since my doc wasn't aware of any blood tests available for Celiac Disease.

The doc performed an endo on me around 5 months back when I wasn't aware of what Celiac disease is. The doc was trying to find the reason for my stomach and malabsorption problems. He said he did not find any ulcers or abnormalities in the duodenum and said I have gastritis. However, he didn't do a biopsy of my small intestine.

I'm currently on a no grain diet, and I'm losing weight very easily. I don't intend to consume gluten ever again regardless of whether I have Celiac disease or not. However, it would be a relief to know for sure, since a lot of packaged foods in my country don't mention on their label whether they contain gluten/wheat. Also, food companies or restaurants here don't take any special precautions to prevent gluten contamination of food.

I might change my doctor. Waiting for the ANA test report to come in.

Thanks.
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#9 jk624

 
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Posted 20 April 2010 - 07:23 PM

Do you have a history of taking alot of antibiotics or steroids? It could be yeast overgrowth. How do you react to sugars and simple carbs, because thats what they eat. I was miserable a few years ago- CFS. arthritis, muscle pain, brain fog, depression, cravings, etc.... went on low carb diet and took antifungals and was able to function again. I still have issues- including possible celiacs- but im much better than i used to be!
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#10 superman

 
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Posted 20 April 2010 - 11:10 PM

Do you have a history of taking alot of antibiotics or steroids? It could be yeast overgrowth. How do you react to sugars and simple carbs, because thats what they eat. I was miserable a few years ago- CFS. arthritis, muscle pain, brain fog, depression, cravings, etc.... went on low carb diet and took antifungals and was able to function again. I still have issues- including possible celiacs- but im much better than i used to be!


Yes I do have a long history of talking a lot of antibiotics and recurrent ear, respiratory tract infections, and skin infections (both bacterial and fungal) for over 18 years now. The infections got worse ever since my stomach problems started 7 years ago.

But I'm not on any antibiotics currently.

I recently read about the role of Candida in causing stomach problems and how Candiaisis causes symptoms similar to Celiac disease. So I started taking strong pre and probiotic a week ago. However, my fat absorption hasn't improved so far and the stomach problems are still there.

Which antifungals and what kind of treatment would you recommend?
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#11 jk624

 
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Posted 22 April 2010 - 05:27 AM

Yes I do have a long history of talking a lot of antibiotics and recurrent ear, respiratory tract infections, and skin infections (both bacterial and fungal) for over 18 years now. The infections got worse ever since my stomach problems started 7 years ago.

But I'm not on any antibiotics currently.

I recently read about the role of Candida in causing stomach problems and how Candiaisis causes symptoms similar to Celiac disease. So I started taking strong pre and probiotic a week ago. However, my fat absorption hasn't improved so far and the stomach problems are still there.

Which antifungals and what kind of treatment would you recommend?



It sounds like you responded well to a gluten-free diet so I would stick to that, that's usually recommended for candida overgrowth or dysbiosis anyway. Candida overgrowth is usally treated mainly with diet and antifungals. Usually you would have to cut out all sugar, breads, potatoes, white rice, anything very starchy as well as junk food like candy, cakes or anything containg sugar. Coffee, milk and dried fruit are also a big no no. Also at first yeast should be avoided. The diet sounds impossible i know i tried it. However there are some probiotic products that reduce the need for this strict diet. One of them is Three lac. You can get it on (Company Name Removed - They Spammed This Forum and are Banned) and many other websites. This worked wonders for me,i worked up to 2 packs twice a day, though not everyone needs that much. Symbion is good too. http://www.symbionfo...probiotics.html If you take either of these 2gether with oxygen elements max (or somthing similar), you should do well, if candida plays a roll in your illness. You can get those things on (Company Name Removed - They Spammed This Forum and are Banned) or many other places, just do an internet search. You can eat whole grains, lots of veggies, beans, hummus, fruit in moderation, brown rice, nuts, seeds, avocados. Also I would recommend a parasite cleanse FIRST. Something called FOOD GRADE diatomaceous earth works well to kill candida and parasites, you can get it here. http://www.wolfcreek...ous_earth.html. Take that with something containing wormwood like this http://www.vitacost....rmwood-Complex. I order all my vitamins and supplements on a a site called vitacost.com All my vitamins are much cheaper than if you bought it in a healh food store, though i dont know if they ship to India.
There are lots of herbal antifungals you can take, this page tells you some: http://www.candida-c...ungal-herbs.htm

Also eat alot of garlic, this kills all the bad stuff. But diet is the most important
This site has alot of info about it, http://www.fungusfoc...dida/cindex.htm

if you have anymore questions just let me know
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#12 WheatChef

 
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Posted 22 April 2010 - 08:51 AM

A Rack Unit (RU) is a measurement used to describe the dimensions of a systems server in Information Technology Networking (computers) so this is definitely not what those readings are referring to. Additionally the "normal" ranges they give for the gliadin tests are very very different from the ranges used in America and Europe so it would be impossible to infer any sort of conversion between the two. It's quite odd though because the same type of test should have been used for both the gliadin IgA/IgG and the tTG IgA which should also have meant they would have been reported in the same type of units. In this country EIA is another way of saying ELISA (Enzyme-Linked ImmunoSorbent Assay) yet CLIA stands for a type of government imposed laboratory regulations, not an actual test.

All in all it sounds like there's possibly even more confusion about the disorder in your country than over here in the states and if true that could mean that the only way of getting an accurate response would be to switch to 100% non-processed foods diet for a while. You mention how difficult it is to assure gluten-free products from restaurants and processed foods so the only way to be sure would be to prepare all of your meals for a while.

Candida is normally treated with some type of anti-fungal azole. However the problem with blindly treating something like this is completely different from just randomly taking antibiotics. Bacterial cells are very different from human cells so drugs that attack bacteria are most often very safe on human cells. Fungi however are very closely related to humans/mammals/birds/insects etc and so any drug taken to kill fungal/yeast cells can be toxic on human cells as well. These medicines typically attack the liver like functions in a fungal cell and can also cause severe liver damage. Because of this any medical treatment you are considering for a yeast overgrowth should be carefully monitored by a doctor and additionally you should seek out a doctor's diagnosis of yeast overgrowth before starting the treatment. Overall, tests for Candida seem to be relatively simple and somewhat reliable.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#13 jk624

 
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Posted 22 April 2010 - 11:00 AM

there are no definite tests for candida- at least not from a traditional doctors office. Nystatin is what I take, along with some herbs, and it IS NOT toxic and does not affect the liver- it mostly stays in the intestines. (prescribed by my DOCTOR) Its even safe during pregnancy and breastfeeding. When someone is desperate enough like I was their willing to try something and "blindly" trying a treatment is the only option. For me the proof was what i saw come out of me after my "blind" treatment. Recurrent fungal and bacterial infections is a BIG indicator of fungal overgrowth in the intestines because the immune system is totally overloaded.
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#14 WheatChef

 
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Posted 24 April 2010 - 11:15 AM

there are no definite tests for candida- at least not from a traditional doctors office. Nystatin is what I take, along with some herbs, and it IS NOT toxic and does not affect the liver- it mostly stays in the intestines. (prescribed by my DOCTOR) Its even safe during pregnancy and breastfeeding. When someone is desperate enough like I was their willing to try something and "blindly" trying a treatment is the only option. For me the proof was what i saw come out of me after my "blind" treatment. Recurrent fungal and bacterial infections is a BIG indicator of fungal overgrowth in the intestines because the immune system is totally overloaded.


There are actually a large number of mainstream medicine tests for candida, whether they're doing a Gram stain of your stools or serum Ig tests. These are all ordered by a practicing MD and sent off to an official lab.

Good call on the nystatin though. Is that available OTC?
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#15 ReikaMindy

 
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Posted 24 August 2010 - 05:44 PM

Sorry that I'm joining this topic rather late, but this site is HUGE and I never posted anything until today as I was just doing research to help me figure out what was best for me.

Superman: I am one of those people who gained weight (about 100 lbs.) as my Celiac Disease became more active. Apparently there are some people who become insulin resistant (thereby putting on weight easily) with this disease. Although I've been gluten free for a year, I recently had several signs of insulin resistance again (weight gain [6 lbs in a week], A1c creeping up [6.0], slightly elevated fasting blood sugar [98], and red spots on my shins which is a darkening of the skin that happens to some people with insulin resistance). I finally figured out that I was getting gluten via my lipstick. Within two weeks of discontinuing the lipstick, I have lost 4 lbs. and the spots on my legs have faded to half of what they were. All this is to say that it is indeed quite possible that your weight issues can be related to gluten intolerance/Celiac Disease.

Because insulin facilitates the transport of glucose into the cells of your body, insulin resistance basically means that the cells of your body are not able to take in nourishment. The glucose then has nowhere to go, so the body converts it to fat. So, when you gain weight from "eating carbs or junk food", the problem is the insulin resistance which could be a side effect of the gluten problem.

Regarding your blood work results for Celiac Disease: Unfortunately it appears that the test can be wrong, perhaps even as much as 20% of the people who have the test done come up false negative. Apparently this may have something to do with the fact that some people do not produce some or all of the factors that produce IgA. My own test was negative across the board although I had severe symptoms of malabsorption, including the fact that whole pieces of food often showed up in my stools, including white rice which is about as digestible as it gets.

You could also have the biopsy of the duodenum/small intestine, but that can also come up false negative. If the damage isn't hugely widespread, it is possible that the area biopsied could be normal (or nearly so).

To make a long story short, I had a horrifically long list of symptoms, most of which were on a list of symptoms of Celiac Disease. I did a gluten free trial and after two weeks I tried a cereal that had given me heartburn in the past. The pain was so bad I wanted to die. Therefore, I feel no compulsion to do the biopsy, especially since the results of that biopsy won't change my mind about my diet.

I'm sorry to hear that keeping to a gluten free diet is so difficult where you are; it sounds very much like how things were in the United States as little as 10 years ago. I can empathize because even though I live in the US, I too have a great deal of trouble with my diet. My issue is that the disease was so advanced, my immune system became hyper-reactive and I now react to many proteins which are similar to gluten. Currently I cannot eat any dairy, legumes (including peanuts and soy), tree nuts, eggs, tomatoes, white potatoes, peppers, or eggplant. It is indeed a difficult diet, and I prepare all of my meals from fresh foods; there are very few processed foods that I can have.

I'm glad to hear that you're getting better.
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