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Biopsy Necessity


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#1 beefree11

 
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Posted 05 January 2011 - 03:00 PM

Ok, I have tried to understand the biopsy theory. One who suspects they have celiac should have the biopsy I have read.



Sometimes biopsies come back negative, even when celiac disease is present. The reason for this is usually that people have started a gluten-free diet without knowing whether they have celiac disease. False negatives can have serious long-term consequences. Untreated celiac disease is linked to complications including osteoporosis, reproductive issues, and certain cancers. If you’ve gone gluten-free prematurely, tell your doctor, as this may affect your test results.


http://www.everydayh...-endoscopy.aspx

My question to the above statement is - what will be done differently if the test does show celiac? Gluten free diet is all I know of as a "cure". I am sorry, I don't understand. I have spent a very long time trying to do research on my daughter's hypothyroidism, Hashimoto's and now this. Would they do more frequent testing for osteoporosis? What about "certain cancers"? Blood work? Routine biopsies? Is there special blood work that can tell a doctor if these complications are beginning? I am sort of becoming upset with her doctor for not performing more elaborate blood work. But she was reassured that the gluten-free diet is the ONLY cure. Then I read damage can continue - without symptoms, due to CROSS CONTAMINATION. Would the biopsy reveal this damage, for I know she gets glutened every now and then despite being cautious.

Next research will be for the PCOS--poly cystic ovarian syndrome. (A bona fide reproductive issue for sure).

In the meantime, she doesn't want to eat gluten for it puts her on the floor with pain and she falls asleep at the wheel from the fatigue. So, I don't know how I can help her. She did have allergy blood work--which alerted us to an intolerance, but that is about it. After reading through the information here on this site, I have found that there is more needing to be done for her. Starting with blood tests. Perhaps even the BIG MAMA of them all: genetic testing. Not sure if that would necessarily help her or not.

I am almost embarrassed to ask this, but does the delicate, finger-like villi of the intestinal surface which are blunted and shortened in celiac -- grow back? Does it once again become 100% on the gluten free diet? So if she were to NOT eat gluten, have the biopsy, her small intestine will most likely look wonderful-as long as there is no other inflammation, of course???!! If she IS celiac, wouldn't there just be old damage-from the 5 to 10 years we suspect she has suffered? Wouldn't the delicate villa look as if it was not right? Is there such a thing as scar tissue with this?

Thank you so much. I have been reading and reading and reading!!

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"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."

Saint Francis de Sales

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#2 psawyer

 
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Posted 05 January 2011 - 03:15 PM

In the vast majority of cases, the villi heal completely on a strict gluten-free diet. The time to heal varies significantly, from a few months to as much as two years.

I had severe damage when originally tested by biopsy in 2000. The process was repeated in 2005, and my villi were normal.

Yes, there will be trace amounts from time to time due to cross contamination. CC can happen anywhere along the production process for a product, and a "gluten-free" final processing plant is no guarantee. The body is constantly regenerating, and the key to managing celiac disease is to keep as close to 100% gluten-free as possible. That way the healing happens faster than any damage.

Genetic testing is of little value, in my opinion. Many have the identified genes and never develop the disease. Some have the disease but not the classic genes.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator

#3 Lisa

 
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Posted 05 January 2011 - 03:44 PM

Thirty percent of the general population carry the genes "associated" with Celiac Disease. Most will never develop the disease.Close to 90%, of those those who have Celiac go undiagnosed.

I believe that 20% of those who carry the gene, will develop Celiac at some period if time. And, it takes an average of 11 years to achieve a diagnosis. I expect that these stats will change dramatically in the next few years.

If you do not carry the associated genes, you cannot develop the disease. But, it's important to know that Gluten Intolerance is a spectrum disorder, with Celiac Disease the most severe.

Non-Celiac Gluten Intolerance can rival the worst of symptoms. :o
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Lisa

Gluten Free - August 15, 2004

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#4 ravenwoodglass

 
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Posted 05 January 2011 - 06:23 PM

I am not a fan of genetic testing for the purpose of ruling out celiac as there is much still to be learned about it.
If she has severe reactions to being glutened then she needs to stay away from it. I had celiac for over 40 years before I was diagnosed. The last 15 of them I was severely ill. On a scope done 5 years after diagnosis I was fully healed but I had my GI symptoms resolve within a very short time gluten free. The arthritis and neuro problems took much longer to heal though.
  • 0
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)

#5 beebs

 
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Posted 05 January 2011 - 11:45 PM

If you do not carry the associated genes, you cannot develop the disease. But, it's important to know that Gluten Intolerance is a spectrum disorder, with Celiac Disease the most severe.


The statistic actually say 99.6%, so that is 1 in 200 coeliacs that don't have the two common genes. But apparently there are more than just the two genes. They say there are 27. Yet they don't test for those in some countries. So I guess the question is - if you are from those countries how would you even know if you had an associated gene?
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#6 Skylark

 
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Posted 06 January 2011 - 10:46 AM

Some of who self diagnose and get really sick from gluten do elect not to challenge. I can't imagine eating gluten for the 2-3 months it takes to get a positive biopsy.

Doctors are trained to rule out problems and get a firm diagnosis. It's part of their training because diseases can mimic each other. For example, celiac, SIBO, and microscopic colitis have similar symptoms. Doing the biopsy helps tell them apart. It gives a baseline, and you also know how bad the villous damage is, although damage doesn't necessarily correlate well with symptoms. The other reason for a positive celiac diagnosis is because so many people are reluctant to stick to a strict gluten-free diet.

If your daughter has a complete remission of her symptoms on the gluten-free diet there really isn't anything else a doctor would need to rule out. If gluten makes her so sick that she can't imagine eating a "normal" amount of gluten for 2-3 months, is convinced she needs the diet, and most important is willing to stick to it strictly, I wouldn't sweat the biopsy.

As far as damage healing, it can take a few years if it's severe, but the villi do grow back in celiacs who are gluten-free. There is no elevated cancer risk in a gluten-free celiac. She should be watched for osteoporosis, but her doctor should be willing to do that as it's such a standard problem for aging people.

We all do get into CC occasionally. One dose of gluten may make us feel sick but there isn't much evidence that a single dose does villous damage. Getting glutened does provoke the immune system, so the lack of observable villous damage after getting glutened once is not a license to go have an occasional cookie. Studies have shown that continual small amounts of gluten will eventually cause some celiac damage again so you do have to be reasonably careful with the diet. Picking toppings off pizza, taking croutons of salad, or other obvious sources of CC will not work.
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#7 beefree11

 
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Posted 06 January 2011 - 11:56 AM

In the vast majority of cases, the villi heal completely on a strict gluten-free diet. The time to heal varies significantly, from a few months to as much as two years.

I had severe damage when originally tested by biopsy in 2000. The process was repeated in 2005, and my villi were normal.

Yes, there will be trace amounts from time to time due to cross contamination. CC can happen anywhere along the production process for a product, and a "gluten-free" final processing plant is no guarantee. The body is constantly regenerating, and the key to managing celiac disease is to keep as close to 100% gluten-free as possible. That way the healing happens faster than any damage.

Genetic testing is of little value, in my opinion. Many have the identified genes and never develop the disease. Some have the disease but not the classic genes.


Thank you for that information, psawyer:). I wasn't sure about the villi. It sounds as if it (villi) totally regenerates itself? No previous scarring, markers of inflammation at all, which is probably why the test can have a false negative result.

I would love to find historical information surrounding this villian (gluten), for sure. Just to understand. Why are so many suffering? Could gluten be reduced or removed all together without causing complications? Is it basically a sensitivity to another preservative--more or less? Is gluten something a baker/manufacturer adds to the ingredients to produce an item that has a general appeal to the masses; making the product all fluffy and air-filled, while simultaneously lengthening shelf life? Let the shelves have it, then. To me that's a big red flag. It isn't natural. Foods that have been "improved" upon to retard natural decomposition. Well, what's it gonna do to one's innards?

@Lisa:

Non-Celiac Gluten Intolerance can rival the worst of symptoms

Is that what my dd is dealing with, then? I have read/heard opposing views on what the actual Celiac Disease definition is and that of Gluten Intolerance. The actual diagnosis of Celiac Disease is done with biopsy results. Abnormal high numbers with blood tests shows a reaction to a substance known to cause allergy--not conclusive. But I also hear that one may have Celiac Disease-- that the biopsy did not reveal even after consuming gluten? A sufferer can be symptom free but still have Celiac?

Spectrum disorder, not sure what this is. More reading to do for sure.

@ravenwoodglass: The information in your siggy troubles me for it reads much like what I have been plagued with for years. I have had the biopsy - was eating gluten - and was found not to have celiac. (Small intestine, biopsy: Duodenal mucosa without villous blunting or increased inflammation--04/04/06). Gallbladder was removed in 1988 but prior to this a small duodenal ulcer was found. After the GB surgery, I began having terrible, debilitating problems with digestion--that lasted for over 10 years. I was handed numerous prescriptions by my doctor and told to stay away from spicy foods. I did research and found probiotics, digestive enzymes and pure food - raw, organic - was what I needed. And still do. I am gluten-free along with my daughter and have no symptoms when I do eat gluten away from her. But I have limited it as much as possible. I cannot find information claiming gluten has any nutritive value.
How have you coped through this? Were you the one to change your diet/eating? Did any doctor or medical professional help you at all????


@beebs - is the genetic testing to discover those that have the gene in order to prevent? Could I still have the gene? Her father? I am going to have to wait on this. I hear pros/cons of the testing to determine other family members and the risk to them. But I had the biopsy in 06, and found not to have the villous blunting. So I am ok, right? But then there is her father. He does have some issues...divertucilitis sp? Loose stools, yes. He blames the blood thinners, statins, etc for that. His diet is awful. There is no getting thru to him.


Could I still get Celiac disease? I was found to have IBS, constant diarrhea, PUD, GERD which prompted the endo/colonoscopy. Found reflux esophagitis, mild chronic inactive gastritis (diet change?) and the duodenal mucosa without villous blunting -- is this something?? What IS dueodenal mucosa?

Has anyone been tested for Lyme Disease?
  • 0
"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."

Saint Francis de Sales

#8 psawyer

 
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Posted 06 January 2011 - 12:31 PM

Is gluten something a baker/manufacturer adds to the ingredients to produce an item that has a general appeal to the masses; making the product all fluffy and air-filled, while simultaneously lengthening shelf life? Let the shelves have it, then. To me that's a big red flag. It isn't natural.

"Gluten" refers to the prolamine protein found in wheat, rye and barley. It is a natural part of the plants.

The protein in oats is similar, and considered gluten by some. Even if you tolerate pure oats, commercial oats in North America are invariably contaminated with wheat and thus not gluten-free.
  • 1
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator

#9 beefree11

 
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Posted 06 January 2011 - 01:12 PM

Some of who self diagnose and get really sick from gluten do elect not to challenge. I can't imagine eating gluten for the 2-3 months it takes to get a positive biopsy.

Doctors are trained to rule out problems and get a firm diagnosis. It's part of their training because diseases can mimic each other. For example, celiac, SIBO, and microscopic colitis have similar symptoms. Doing the biopsy helps tell them apart. It gives a baseline, and you also know how bad the villous damage is, although damage doesn't necessarily correlate well with symptoms. The other reason for a positive celiac diagnosis is because so many people are reluctant to stick to a strict gluten-free diet.

If your daughter has a complete remission of her symptoms on the gluten-free diet there really isn't anything else a doctor would need to rule out. If gluten makes her so sick that she can't imagine eating a "normal" amount of gluten for 2-3 months, is convinced she needs the diet, and most important is willing to stick to it strictly, I wouldn't sweat the biopsy.

As far as damage healing, it can take a few years if it's severe, but the villi do grow back in celiacs who are gluten-free. There is no elevated cancer risk in a gluten-free celiac. She should be watched for osteoporosis, but her doctor should be willing to do that as it's such a standard problem for aging people.

We all do get into CC occasionally. One dose of gluten may make us feel sick but there isn't much evidence that a single dose does villous damage. Getting glutened does provoke the immune system, so the lack of observable villous damage after getting glutened once is not a license to go have an occasional cookie. Studies have shown that continual small amounts of gluten will eventually cause some celiac damage again so you do have to be reasonably careful with the diet. Picking toppings off pizza, taking croutons of salad, or other obvious sources of CC will not work.


Thank you Skylark. I have been very serious about learning as much as I can. I need to learn if there is a way to stop the localized autoimmune diseases--alleviate the inflammation without the use of pharma. Will the diseases just continue for her? Will she develop more? My GOD, she's only 25. And this is hereditary? This is what her parents gave her? Is being hypothyroid along with Hashimoto's working against her in the gluten/celiac scenario more so than someone who does not have the hypo/hashis? Since the celiac is immune disorder related, is her botched up system working in overdrive along with all of these other disorders? Then there is the Poly cystic ovarian syndrome to consider as well. None of her doctors can get together on this at all. They write prescriptions for various ultra sounds, give meds and basically send her away.

Can the auto-immune disorder be stopped?

She is totally gluten-free. Her choice which I staunchly support. Our first gluten-free Thanksgiving dinner in 09, was AWESOME, organic and totally Gluten free!

You cleared up some confusing things for me. Thanks again! :)
  • 0
"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."

Saint Francis de Sales

#10 shopgirl

 
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Posted 06 January 2011 - 01:31 PM

A great book about gluten, the history of gluten in the human diet, Celiac Disease, and non-Celiac gluten intolerance is "Healther Without Wheat" by Stephen Wangen. It's an excellent primer.
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#11 ravenwoodglass

 
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Posted 06 January 2011 - 01:40 PM

@ravenwoodglass: The information in your siggy troubles me for it reads much like what I have been plagued with for years. I have had the biopsy - was eating gluten - and was found not to have celiac. (Small intestine, biopsy: Duodenal mucosa without villous blunting or increased inflammation--04/04/06). Gallbladder was removed in 1988 but prior to this a small duodenal ulcer was found. After the GB surgery, I began having terrible, debilitating problems with digestion--that lasted for over 10 years. I was handed numerous prescriptions by my doctor and told to stay away from spicy foods. I did research and found probiotics, digestive enzymes and pure food - raw, organic - was what I needed. And still do. I am gluten-free along with my daughter and have no symptoms when I do eat gluten away from her. But I have limited it as much as possible. I cannot find information claiming gluten has any nutritive value.
How have you coped through this? Were you the one to change your diet/eating? Did any doctor or medical professional help you at all????


Has anyone been tested for Lyme Disease?


I have coped fairly well although I do have PTSD and a great distrust and dislike of doctors as a result of the very long time it took me to be diagnosed. I did finally get diagnosed as a result of a very good, very elderly allergist who after doing allergy testing and finding I showed allergic to all but one of 99 things I was tested for put me on a strict elimination diet. Reintroducing gluten caused a violent response and I was then sent to a GI doctor who demanded another challenge which resulted in a severe GI bleed. I at that point got my diagnosis. Even though the doctor was good about testing my children after this, they both were positive on blood work and one on biopsy, he apologized over and over again but I switched GI doctors anyway. My new GI did a scope after 5 years gluten-free which showed that I had healed fully. The internist at that time, I no longer see him, did bone scans which showed my osteopenia had progressed to osteoporosis by the time I was diagnosed.
I think you are doing the right thing by avoiding gluten and hope you continue to do so. Be careful with consuming small amounts even though you don't seem to react. At times our reactions can be delayed so an upset tummy or depression etc. you have up to a week after injesting gluten could be a result of that injestion.
  • 1
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)

#12 ravenwoodglass

 
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Posted 06 January 2011 - 01:45 PM

You asked in another post if the autoimmune process can be stopped. In my case it was. My arthritis is in total remission and all other autoimmune issues also resolved. The damage to my joints and kidneys has not progressed but the damage is still present in that of course my hands are still 'deformed' and the least bit of gluten or soy will cause my kidneys to bleed. Although my doctor thought that my very early menapause might reverse my diagnosis was too late for that.

Celiac disease is hereditary and all family members should be tested. Just because one is negative on testing does not mean that others won't show up. My family is an example of that in that all other members did show positive on blood work.

And yes I was tested for lyme along with a long list of other diseases and disorders.
  • 0
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)

#13 beefree11

 
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Posted 06 January 2011 - 04:17 PM

How awful you had to endure all those years of illness, ravenwoodglass. Good to hear you are healing!
My hope is one day to rid the entire home of gluten toxins once and for all.

I will be adding "Healther Without Wheat" by Stephen Wangen, to my reading soon. Thanks shopgirl.

I have found so much information here. So my daughter basically lost half her thyroid to undigested gluten molecules that traveled through her bloodstream to her thyroid and caused damage
initiated by the immune system that is programmed to fight gluten wherever it finds it(http://www.healthnow...en_science.html). As well as her ovaries?

She is hypothyroid because of the Hashimoto's due to the gluten?

When her husband decided to leave her (pretty much alone in another state, with no real income to support herself since she had just begun classes), is when she began to totally fall apart. This was when she was put on anti-depressants - which did NOTHING. Her health deteriorated to the point she could no longer fight any infections. I still wonder if she has Lyme's. But not one doctor considered gluten/celiac along with the Hashimoto's until she moved back home in 09. Her primary care physician was on the alert when she noticed the thickening of her throat and had her sent for an ultrasound, which confirmed nodules. From what I recall, her thyroid was enlarged for some time, maybe even when she was first married in 03. :( Nodules/right lobe removed in 05. Gluten/wheat allergy confirmed in 09.

How sad it is for all. Food sensitivities and/or allergies may be the first inclination for the many symptoms of celiac disease...so why didn't any of those "doctors" even consider it? They really feel that by surgically removing the organ and by writing prescriptions for Synthroid, everything is all better?? REALLY?

Ooooh, I'd like to send them all some nasty letters. But I won't. I will just keep reading and learning as much as I can to help her. (We cannot locate a doctor that will help her with all of her auto immune issues. It was suggested she see a gyne for the PCOS, which she did. They did an ultrasound, confirmed the diagnosis and wrote a script for birth control pills)

Thank you everyone for taking the time to help me understand. I truly appreciate it.
  • 0
"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."

Saint Francis de Sales

#14 Skylark

 
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Posted 06 January 2011 - 05:45 PM

No, no, no, no. Gluten does not cause Hashimoto's thyroid disease. If someone is saying otherwise, please let me know what peer-reviewed scientific articles they are citing.

Gluten sensitivity and autoimmune thyroid disease are somewhat associated, in that a slightly higher percentage of celiacs have thyroid disease than in the general population, but it's not clear (and I'd say unlikely) that there is a causal relationship. The genetics that predispose to gluten sensitivity also independently predispose towards Hashimoto's, Sjogren's syndrome, Type 1 juvenile onset diabetes, and rheumatoid arthritis. The only one of these diseases that is helped on the gluten-free diet is rheumatoid arthritis, but it doesn't go into complete remission the way celiac disease does. Remember also that there are people with all these diseases who are not celiac.

The gluten-free diet typically does not resolve Hashimoto's and there is a cancer risk with the nodules so the surgery she had was absolutely necessary. My own thyroid disease has grown gradually worse even on the gluten-free diet. Really, Hashimoto's isn't that big a deal once you're on the right dose of thyroid hormone.
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#15 T.H.

 
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Posted 07 January 2011 - 12:59 AM

How sad it is for all. Food sensitivities and/or allergies may be the first inclination for the many symptoms of celiac disease...so why didn't any of those "doctors" even consider it?

Ooooh, I'd like to send them all some nasty letters.


I think that same thing. It's...beyond aggravating. When members of my family were diagnosed, we sent out word to my other relatives. Three of my cousin's children have been suffering from stomach pains and various gut issues for more than two years, including pretty noticeable weight loss for one of them. The doctor's diagnosis? Stress or anxiety about school.

Boggles the mind.

However, honestly? I'd encourage you to send out those letters. They don't even have to be that nasty - although man, it is tempting, isn't it? Because celiacs don't have pharmacies sending out eduational material to doctors, so many, many doctors remain completely ignorant about the disease, and about how much they are missing, unless all we celiacs start informing them what happened, and how they screwed up.

This is what my symptoms were, Doctor, this is what you said it was, and here, oh ignorant doctor, is what it actually WAS. Please, don't let your other patients with the same symptoms suffer like I/my daughter/etc... have had to suffer.

I have actually started writing these letters. I am trying to be polite, and informative, and citing studies to back up my information. I am trying to present it as advocacy. But if they really dropped the ball, I'm not pulling my punches.



For your daughter, however, here's a bit of information that might be important.

- First, I'm sorry to say, the most recent information is that quite a few celiacs AREN'T healing completely( http://glutendoctors...never-heal.html ). The reason this is important is that you want to make sure your daughter's doctor is monitoring her vitamin levels pretty regularly until she's either at good levels, or they figure out what supplements she may need. Some celiacs will require high levels of vitamin for quite some time, more than would be safe in someone who can absorb vitamins properly, so it's definitely something you want a doctor involved in, if possible.

- Second, on the gluten free diet, it may help your daughter to understand that gluten free is a legal term, not a true definition. It essentially means: this food has less gluten than the legal definition required to call it gluten free. Well, if the USA actually HAD a legal definition, which it doesn't. Most companies are following what they assume will BE the definition - 20ppm of gluten or less - but this is, again, very low gluten, not 'zero' gluten. Most celiacs do fine on this, but it's like low calorie food. Eat enough low calorie foods, and it's still too many calories. Eat enough gluten free food (like crackers, pastta, etc...) and a celiac can still get too much gluten.

with your daughter so sick, it may be important to her healing to beware of that, in the beginning especially.

- re: the biopsy. I have heard people who want it, and people who don't. My daughter was positive on the blood test, and we left it at that and went gluten-free. My son was negative on the blood test. We left it at that, but tried him on the gluten free diet, and he improved. So they are both gluten free now, and doing better, and I'm pretty much okay with that as long as I can get a doctor who will test their vitamin levels periodically, which our current doctor will.

For whether to go gluten free without a diagnosis, but with symptoms, you might find this interesting:
http://www.medpageto...nterology/23955

Good luck - I hope your daughter begins to improve without the celiac disease making everything even harder on her, the poor dear.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive



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