Biopsy Necessity

[beefree11]

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

[psawyer]

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.

[Lisa]

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.

[ravenwoodglass]

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.

[beebs]

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?

[Skylark]

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.

[beefree11]

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?

[psawyer]

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.

[beefree11]

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!

[shopgirl]

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.

[ravenwoodglass]

@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.

[ravenwoodglass]

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.

[beefree11]

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(Open Original Shared Link). 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.

[Skylark]

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.

[T.H.]

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( Open Original Shared Link ). 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:

Open Original Shared Link

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

[ravenwoodglass]

How

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

No. If the celiac had anything to do with that it would be due to the antibodies not undigested gluten. It isn't undigested gluten that causes autoimmune issues it is the antibody reaction to gluten and then the antibodies themselves that cause the damage. Those antibodies don't cause all autoimmune diseases. Many are lucky like I was and have most of their autoimmune issues resolve but not certainly not everyone.

[beefree11]

No, no, no, no. Gluten does not cause Hashimoto's thyroid disease.

.

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.

Ooops, MY personal observation. Sorry. I read that --

In those who are intolerant, the undigested gluten protein gets absorbed into the lining of the small intestine but is not seen by the body as a source of nutrition - quite the contrary. The body's immune systems attacks these protein particles as something that needs to be destroyed, in very much the same way as it would attack an invading organism such as a virus, bacteria or parasite. The attack by the immune system causes inflammation and damage to the small intestine, resulting in the following problems:

1. The surface of the small intestine becomes inflamed causing the tissue to become unhealthy, and in the case of celiac disease destroyed. This can result in malabsorption, meaning that the small intestine's ability to absorb essential vitamins, minerals and nutrients becomes compromised.

2. The attack of the immune system additionally affects the structural integrity of the small intestine and large gaps in the membrane occur resulting in increased permeability, also known as a leaky gut. Partially digested gluten proteins would not be allowed to pass through a healthy small intestine, but rather they would be excreted. The leaky gut, however, allows the large undigested gluten molecules to enter the blood stream where they can then travel to distant tissue and create damage. The damage is initiated by the immune system that is programmed to fight gluten wherever it finds it. This phenomenon explains why gluten intolerance can result in problems throughout the body in addition to the GI tract. In fact, gluten intolerance is associated with over 100 different symptoms affecting most systems throughout the human body. Open Original Shared Link

Could the nodules have been caused by the undigested gluten molecules? I know they are tested for cancer, but do they check to find what exactly the nodules are comprised of?

Just a thought. For I wonder HOW does the thyroid begin this journey when there are so many suffering from gluten problems along with the thyroid issues? Knowing that MOST doctors don't even consider thyroid issues unless numbers are way off. Daughter's neck was enlarged for years before numbers went wonky. My numbers are perfect! It's just a muli-nodular goiter that they want to surgically remove. FNA inconclusive. I am considering my options. But my digestive issues went unresolved for years. Perhaps I should pursue the gluten/celiac mystery for my own health's sake, but a biopsy claimed no villous blunting for me...but OH! there are a couple of symptoms I share.

If only we can get her on the OLD ARMOR or some reasonable facsimile. I do not like what I have read about bones and Synthroid. I have read you cannot be on Cytomel forever. So, what to do? I do understand that the gluten-free diet does not alter the Hashimoto's in any way. It is strictly for digestion - or lack there of of those darn proteins - but they somehow seem to be connected in that they are autoimmune diseases. I know, I'm grasping here. The only member in both of our families that had anything remotely close was grandfather - her dad's father. He had Graves. I have many siblings, who have a few kids and nothing. None of his brothers or their kids seem to be experiencing any issues at all. So does that throw out the "hereditary" theory? Ugh. Brain on overload. But thank you so much for this. I need to keep coming back and reading, then research.

@T.H. thanks for all of your information! And an informative letter to a few of those doctors might be a good idea. Maybe the next person won't have to suffer for so long! I like that!

Yikes about the not healing information. We are still new at this and I don't believe she understands the seriousness of the disease. I think we BOTH were under the impression: DONT EAT GLUTEN=CURE!! There is so much more. We are very serious about her diet and cc. I am pushing salads and organic free range chicken all the time!! But the vitamin issue needs to be readdressed. Thank you.

We are both on diets and any carbs are bad in my book!! It does concern me that she craves them sooo much. I try to push raw fruit bars and fruit. Yet she selects the bready type things right away. Now that's something I may have to investigate, too. We have removed as many gluten items, food and non-food, from the house altogether. How do you find the actual amount of gluten? Or is that something we don't have access to yet listed on the gluten-free foods? Wow. There is so much more to learn!!

Thank you everyone. Getting ready to make the doggies raw, grain free dinner and our gluten-free somewhat cooked dinners!!

[Skylark]

You forget how many people suffer from thyroid issues who are not celiac, and how many celiacs do not have thyroid issues. The connection seems to be an underlying immune dysfunction. It has been shown to have a genetic link, but many disease with underlying genetics can still be sporadic in families. It sounds like you're looking for something/someone to blame for your daughter's health issues but taking things out on gluten does not change things and will only make you confused. Thyroid nodules are composed of inflamed thyroid tissue that is under autoimmune attack from antithyroglobulin and antithyroid peroxidase antibodies.

Again I'm going to ask you for peer-reviewed research. Where did you read that Cytomel is a problem? Was it in the medical literature or on some Internet site? And that Synthroid is uniformly hard on bones (this is only true if it's overdosed)? And why would you wish for Armor if you believe T3 is not safe? Remember that any idiot with a computer can make a website. Think of the open Internet as similar to the National Enquirer. Fun reading, but not credible.

You can never know the actual amount of gluten in processed foods. Gluten-free means anything from naturally gluten-free so it would be 0 ppm (like Yoplait and many deli meats that are labeled gluten-free) to below 10 ppm to below 20 ppm and you have to write the companies and ask. A standard of 20 ppm was proposed but it never passed congress. I can tell you that Amy's tests to 20 ppm, Kinnikinnick to 10 ppm, and Bob's Red Mill looks for no detectable gluten (meaning below 3-5 ppm). Foods most likely to be CC with traces of gluten are grain foods. It sounds like you're limiting those anyway.

The easy way to get guaranteed gluten free food is exactly what you're doing. Fruits, vegetables, salads, chicken, potatoes, rice, etc. If you cooked it yourself from fresh, whole ingredients you know it's gluten-free.

[Gemini]

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.

As someone with 4 autoimmune diseases myself, the way I understand it works is that IF you have underlying Celiac Disease and the autoimmune attack is allowed to continue, once the small intestine has been damaged, the immune response will look to other organs to start destroying. Inflammation becomes worse and worse unless gluten is removed from the diet.

I have Hashi's also and my antibody count was 1200, where the norm should under 40. Once I removed gluten from my diet it took 5 years but my latest testing showed my antibody count to be under 40....in the normal range. I still take thyroid hormone but have been able to cut the dose in half.

Ditto for my Sjogren's also but the damage to my lacrimal and salivary glands was permanent. Although my eyes are light years better, I still have on-going issues with them. While gluten certainly did not cause these other problems for me directly, it indirectly caused the inflammation and continuing attack. Once you calm down the immune system, things can get much better. I have not developed anything else since going gluten-free.

[beefree11]

You forget how many people suffer from thyroid issues who are not celiac, and how many celiacs do not have thyroid issues. The connection seems to be an underlying immune dysfunction. It has been shown to have a genetic link, but many disease with underlying genetics can still be sporadic in families. It sounds like you're looking for something/someone to blame for your daughter's health issues but taking things out on gluten does not change things and will only make you confused. Thyroid nodules are composed of inflamed thyroid tissue that is under autoimmune attack from antithyroglobulin and antithyroid peroxidase antibodies.

Again I'm going to ask you for peer-reviewed research. Where did you read that Cytomel is a problem? Was it in the medical literature or on some Internet site? And that Synthroid is uniformly hard on bones (this is only true if it's overdosed)? And why would you wish for Armor if you believe T3 is not safe? Remember that any idiot with a computer can make a website. Think of the open Internet as similar to the National Enquirer. Fun reading, but not credible.

You can never know the actual amount of gluten in processed foods. Gluten-free means anything from naturally gluten-free so it would be 0 ppm (like Yoplait and many deli meats that are labeled gluten-free) to below 10 ppm to below 20 ppm and you have to write the companies and ask. A standard of 20 ppm was proposed but it never passed congress. I can tell you that Amy's tests to 20 ppm, Kinnikinnick to 10 ppm, and Bob's Red Mill looks for no detectable gluten (meaning below 3-5 ppm). Foods most likely to be CC with traces of gluten are grain foods. It sounds like you're limiting those anyway.

The easy way to get guaranteed gluten free food is exactly what you're doing. Fruits, vegetables, salads, chicken, potatoes, rice, etc. If you cooked it yourself from fresh, whole ingredients you know it's gluten-free.

Thanks for the help, Skylark. I appreciate it. I know for years my daughter's thyroid issues went undiagnosed due to blood work numbers being in range. Could she have had an allergy all her life? I mean if it is genetic, chances are she did, correct? Why have I read...get ya the book info later, that Hashimoto's and Celiac somehow are found together? I just have, here in fact! She was dxd with Hashimoto's in 2005. Hypothyroid in 2005. Years and years of stomach issues: CONSTIPATION THAT LASTED OVER A WEEK. Constant up and down with the dosages of the Synthroid meds, with NO RELIEF. Switched to Levothyroxin by her PCP which was WORSE! More up and down up and down...NO RELIEF AT ALL. 2009 doctor ordered basic allergy tests that come back in high ranges for an allergic reation, I believe the results to read. Prescribes Cytomel along with Synthroid. Why didn't the other doctors prescribe Cytomel (could there be issues with the meds) I don't know WHY here doctors DID or DID NOT do the things they do...I am just glad I question it.

As for genetic/hereditary...could be, maybe not. There is no proof. So I will go on in my quest to discover if there is some other issues going on with her. I must. I need to get her to feel better. To be healthy. That is my only concern. Not to blame or take it out on gluten. Whatever that means.

Yes, I have read Cytomel can be problematic. I tend to trust the "idiots".

When Not to Use Cytomel

T3 should not be used if you have the thyroid disorder, thyrotoxicosis, uncontrolled adrenal gland disorder or Graves disease, points out the Merck Manual. Consult your doctor before taking Cytomel or T3 or for an adjustment in your dose if you have any of the following diseases or conditions: angina pectoris, heart disease, diabetes, congestive heart failure or pituitary gland problems.

Read more: Open Original Shared Link

I don't know if she has ANY OF THE LISTED DISEASES -- there haven't been any tests done for them. Since there are NO tests. She doesn't have them. If it hadn't been for me "looking for someone to blame" she would not be gluten intolerant by medical standards for there wasn't any tests done until I inquired about the relationship of thyroid to the gluten complaints that I read about on websites. She could quite possibly have pituitary gland problems. Or diabetes. And just lumping ALL of the symptoms into the Hashimoto's arena. For what else can we do? No doctor will test her even though she complains. They just write her MORE prescriptions.

Steroids/cortisone for joint pains. Laxatives for constipation. Anti-biotics for stomach pains. Birth control pills for menstrual issues. Anti-depressants for mood/depression issues. Not one of them ever tested for allergies. Gluten. Celiac. Even though she had the symptoms...she doesn't have the disease unless the lab results say so. That doesn't sound right to me. But whatever.

Many patients are UNDIAGNOSED and until they speak to groups, read books and/or find websites they will continue to go UNDIAGNOSED. Be it for thyroid issues or Celiac. Or any others. Even though my daughter was constantly complaining about the hair on her face growing thicker and darker, the problems with her periods, etc NOT ONE DOCTOR ran ANY tests for it!! It was I that got into websites, read about PCOS and many of the Hashimoto's sufferers that brought about an ultrasound that found the cysts on her ovaries, that sent her to a "specialist" that gave her a prescription for birth control pills. But the day before she had the ultra sound she was NOT considered to have PCOS, doesn't mean she didn't. she was undiagnosed.

Well, this is futile. I feel I am defending myself here. She isn't getting any relief on the Synthroid/Cytomel combo. And I have read many sites that it can cause bone loss.

Special warnings about this medication

Open Original Shared Link

Synthroid has profound effects on the body. Make sure your doctor is aware of all your medical problems, especially heart disease, clotting disorders, diabetes, and disorders of the adrenal or pituitary glands. The doctor will also need to know about any allergies you may have to food or medicine, and will ask for the names of any medications you take, whether prescription or over-the-counter.

You should receive low doses of Synthroid, under very close supervision, if you are an older person, or if you suffer from high blood pressure, angina (chest pain caused by a heart condition), or other types of heart disease. If you develop chest pain or additional circulatory problems, your dosage may have to be reduced.

If you have diabetes, or if your body makes insufficient adrenal corticosteroid hormone, Synthroid will tend to make your symptoms worse. If you take medication for any of these disorders, the dosage will probably have to be adjusted once you begin taking Synthroid. If diabetes is the problem, you should immediately report to your doctor any change in your glucose readings.

Postmenopausal women on long-term Synthroid therapy may suffer a loss of bone density, increasing the danger of osteoporosis (brittle bones). To minimize the loss, the doctor will prescribe the lowest dosage needed to control symptoms of thyroid deficiency.

CYTOMEL

Musculoskeletal

Musculoskeletal side effects of thyroid hormone therapy have included an increased risk of osteoporosis. However, data from long-term studies are conflicting.

A study evaluated the effect of long-term thyroid hormone therapy on bone mineral density in 196 women (mean age, 74.4 years) compared to a control group comprised of 795 women (mean age, 72.1 years). The mean daily thyroxine dose was 1.99 mcg/kg (range, 0.3 to 6.6 mcg/kg) and the mean duration of therapy was 20.4 years (range, less than 1 to 68 years). Women taking daily doses of 1.6 mcg/kg or more had significantly lower bone mineral density levels at the ultradistal radius, midshaft radius, hip, and lumbar spine compared to controls. However, estrogen use appeared to negate the adverse effects of thyroid hormone on bone mineral density.Open Original Shared Link

My God, Skylark. I am not looking for someone to blame. I am looking to find help for my daughter. She could be diabetic, who knows? Never tested. She could possibly have adrenal issues....NOT TESTED. Just handed another script and sent away. Could the problems she has with her periods that sometimes DON'T APPEAR FOR MONTHS be a clue or a symptom? Who knows? She told the specialist. She has birth control pills. She doesn't eat flour products. So, I guess there is NO disease.

Open Original Shared Link

If you have been diagnosed with PCOS, it is important to understand the long-term health risks associated with the disease. Not all women with PCOS will develop all of these conditions, but having PCOS does increase your risk. It is important to have your health monitored regularly by a physician who has experience treating women with PCOS. Regularly scheduled physician visits should continue after menopause, even though you will no longer have erratic periods and other PCOS symptoms may lessen.

The physician who has experience gave her the script for bc pills. No follow-up, no return visits suggested unless "something else comes up".

Thanks again for the info.

[ravenwoodglass]

Beefree11 thanks for posting those links. They are good ones from good sources and may be helpful to many. Please don't feel like you are defending yourself. It is not unusual for folks to ask for links to information and it helps others.

Your a great Mom to be working so hard to help your daughter.

I do hope she responds well to the diet. As you have seen from some of the replies there are folks who have had autoimmune issues become much better once on the diet. Will the gluten free diet cure 'everything' for 'everyone' of course not but it sure won't hurt. I hope it helps your daughter and she is feeling better soon.

[beefree11]

Thank you ravenwoodglass for your kindness.

[Jestgar]

Well, this is futile. I feel I am defending myself here.

You are not. Thousands of people use this site both for giving, and getting information. If someone has specific information on health we ask that they post where they got the information. It helps the causal reader distinguish between fact and opinion, and helps the more serious reader find a place to start their own research.

Having so many people with different focuses is what makes this site an amazing resource. Thanks for contributing to it.

[Skylark]

Please don't feel like you are defending yourself. Your messages sound so distressed and frustrated I was trying to help you sort fact from myth! I am a scientist and it's what I do all day long, both here and at work. We get into these awful health problems and have to self-diagnose on top of it all and tell the doctors who are supposed to be helping us what to do. It's very frustrating.

Thank you for the links on Synthroid. The warnings on cytomel are to avoid use in people who have thyroid or adrenal over activity, not for Hashimoto's. It would be as safe as Armor so don't worry about that with your daughter. I think the bone warnings on Synthroid are mostly to keep doctors from overdosing it on patient request. My doctor once told me that some people get a lot of energy and lose weight on Synthroid overdose and they push their him to keep them on a slightly higher dose than necessary. That does cause bone problems. He said he has not seen bone problems on a does that is just enough to remove hypothyroid symptoms.

PCOS sounds terrible. I'm so sorry to hear your daughter has that as well. I had never really heard about it. I hope it gets better with her on the gluten-free diet.

[beefree11]

Please don't feel like you are defending yourself. Your messages sound so distressed and frustrated I was trying to help you sort fact from myth! I am a scientist and it's what I do all day long, both here and at work. We get into these awful health problems and have to self-diagnose on top of it all and tell the doctors who are supposed to be helping us what to do. It's very frustrating.

Thank you for the links on Synthroid. The warnings on cytomel are to avoid use in people who have thyroid or adrenal over activity, not for Hashimoto's. It would be as safe as Armor so don't worry about that with your daughter. I think the bone warnings on Synthroid are mostly to keep doctors from overdosing it on patient request. My doctor once told me that some people get a lot of energy and lose weight on Synthroid overdose and they push their him to keep them on a slightly higher dose than necessary. That does cause bone problems. He said he has not seen bone problems on a does that is just enough to remove hypothyroid symptoms.

PCOS sounds terrible. I'm so sorry to hear your daughter has that as well. I had never really heard about it. I hope it gets better with her on the gluten-free diet.

The particular highlighted portion is what I question. Could she possibly have adrenal issues? My frustration is what drives me. I should step back every now and then and take a deep breath. I am trying to get her life as normal as possible. I have repeatedly told her there is nothing wrong with her. Most humans cannot digest those proteins that are upsetting her digestion. She feels like a freak. When brain fogs happen with being glutened I have to remind her of everything. Books, classes, did she leave a report in the printer? and on and on. I don't know how she has remained on the dean's list for the last three years, but I want to help her accomplish her goals. She is majoring in finance/minoring in accounting. While working the most odd hours 30 minutes away at a sports facility, teaching young children figure skating/hockey.

Most of the time she passes on the girlfriend time since they seem to want to gather at non gluten-free restaurants and the cc is frightening to her. More so lately with the last episode of her almost being taken to the ER (new years day at 430am) and she has no medical insurance. COBRA ran out since she left her last employer who was over an hour away and six tolls one way (a full tank of expensive gas,too--everyday). She loved that employer (Coach leather), but it was too stressful. (We picked up the tolls $16.00 per day, the gas $120 a week and car repairs). And boop there goes medical/dental/vision. She signed onto Cobra that we paid monthly for, but it only lasts for so long. Now? NOTHING. ZIP.

I am doing some research - albeit anecdotal at best - to find which blood tests she needs now, to see where she is with her meds. She cannot make an appt with her doctor for he charges $300! OUCH. There is a site prepaid labs or something like that and I will cover the blood work, but I might add a couple other things for my own peace of mind: anti-tTG antibodies, anti-deaminated gliadin, HLA DQ2 or DQ8. No. I have NO idea what I am doing. Or if I am doing it right. I must rely on the testimony and/or input of actual people and trust myself. All it can hurt is my bank account and I have done that with a bad color and dye job on my head for about the same amount.

Why that darn doctor didn't order more work to find out MORE while she had the darn coverage is beyond anything I can comprehend. She trusted him as well. And that's where we are. I can only go so far with the doctor. I can't make demands. If I suggest this and that to her to bring up to her doctor it turns into a "thing" that gets us both upset. We have quite the conundrum here: doctors that seem to not care about patient health care, let alone a life as normal as possible. Sorry, going off again!

She has a dual distinction: the poster child of undiagnosed auto-immune diseases. Why won't any NONE of these doctors listen to her? For four long years she was having digestive problems. Weight issues. It was I that found the relationship of Hashimoto's to celiac. As soon as she got back home we were in Chicago with a new doctor that seemed so promising. Until I guess new medical laws kicked in or something? I don't know. But he is NOT the shining star I once believed. And thanks to HIPPA, I can't really say anything about it. I could become his patient and make him regret his career choice, but I will save that for a later date. He had the opp to really investigate what is going on with his patient: my daughter. She actually wrote lists of problems. He would discuss the results of blood work. Then...nothing. See ya in a year, or whatever. If I am looking for someone/thing to blame it's all the doctors that pretended to care for her.

Didn't mean to turn this into a vent. Now on with the learning.