This process is horrible.

[nickibeaks]

Just so frustrated today. I had two different blood tests over the past month from different companies while re introducing gluten, DHP IgG positive and TTG IgA positive on the second.

still had to wait for my biopsy because it’s arbitrarily important in diagnosis, fine. I asked if we could do a capsule endoscopy instead because I have extreme tenderness in my lower abdomen as well as the appendix area, and I have had a negative colonoscopy before because that isn’t where any of my pain is. No, insurance requires the endoscopy.

Well 250 dollars later for a test I knew was useless... my endoscopy was today and they come in saying, “congrats it all looks fine! We will see what the biopsies say in a week” I can’t start the capsule endoscopy until those results come back so I get to keep eating gluten and feeling like s$#&.

the lack of sensitivity on the part of doctors to the fact that to people with an chronic undiagnosed illness “congrats we found nothing” is actually super frustrating and disheartening news, especially when two positive blood tests logically seems like enough info to work with already.

its just not a great day today.

[cyclinglady]

Older scopes can not see any damage visually.  I got the same message that “everything looks great” until the pathologist’s report came in showing severe damage.  

[nickibeaks]

Oh interesting!! 
 

ive been doing more reading today, and every study I find about people who are symptomatic with potential celiac end up having symptom relief on a gluten free diet anyway, so that seems like good justification to just take that route if they are negative. For once my google frenzy was actually stress relief ?
 

they’ll be doing a camera scope if the results are negative, which will look at the part of my intestines that actually hurts, so that might give some answers too.

[docaz]

Unfortunately, even if the intestinal mucosa looks fine on endoscopy, it does not mean that it looks fine under microscopy (because otherwise, there would be no point in examining under microscopy).

The other aspect that is a little controversial is that the biopsy is the "gold standard". I know leading clinicians who are on both side of the opinion spectrum.

One clinician at the University of Chicago feels that if tTG is positive, that's enough to diagnose celiac disease because even if nothing shows up on the biopsy, the bood test are specific and sensitive enough that he would still recommend a gluten-free diet because he feels that it is just a matter of time until the changes in the intestine will happen. 

On the other hand an equally reputable clinician also at the U of C and one at the Mayo clinic feel that the biopsy is important but what is interesting that they also agree that even in a situation with a negative biopsy they would recommend a gluten-free diet. 

Jeff Adams wrote just reported a few days ago on this site the fact in some areas the guidelines for biopsies in children are changing to the effect that many biopsies will not be performed anymore because their contribution to the diagnosis is questionable and if it justifies the risk and the expense for the biopsy. Here is the link: 

 

Based on what I read, it appears that the blood tests are much more often used to diagnose and it appears that it is very uncommon and might not happen at all that there is a positive biopsy (not just any inflammation but a specific inflammation with a increase of neutrophils in the wall of the intestine that is diagnostic for celiac disease) and a negative blood test. I would not be surprised at all if the guidelines for diagnosing adults will also change and in some situations, biopsies will not be recommended anymore. 

[cyclinglady]

31 minutes ago, docaz said:

Unfortunately, even if the intestinal mucosa looks fine on endoscopy, it does not mean that it looks fine under microscopy (because otherwise, there would be no point in examining under microscopy).

The other aspect that is a little controversial is that the biopsy is the "gold standard". I know leading clinicians who are on both side of the opinion spectrum.

One clinician at the University of Chicago feels that if tTG is positive, that's enough to diagnose celiac disease because even if nothing shows up on the biopsy, the bood test are specific and sensitive enough that he would still recommend a gluten-free diet because he feels that it is just a matter of time until the changes in the intestine will happen. 

On the other hand an equally reputable clinician also at the U of C and one at the Mayo clinic feel that the biopsy is important but what is interesting that they also agree that even in a situation with a negative biopsy they would recommend a gluten-free diet. 

Jeff Adams wrote just reported a few days ago on this site the fact in some areas the guidelines for biopsies in children are changing to the effect that many biopsies will not be performed anymore because their contribution to the diagnosis is questionable and if it justifies the risk and the expense for the biopsy. Here is the link: 

 

Based on what I read, it appears that the blood tests are much more often used to diagnose and it appears that it is very uncommon and might not happen at all that there is a positive biopsy (not just any inflammation but a specific inflammation with a increase of neutrophils in the wall of the intestine that is diagnostic for celiac disease) and a negative blood test. I would not be surprised at all if the guidelines for diagnosing adults will also change and in some situations, biopsies will not be recommended anymore. 

While your points are valid, I suspect that saving money has a bit to do with it too.  

“The new guidance, published in the Journal of Paediatric Gastroenterology and Nutrition, could save millions of euros in direct healthcare costs each year as biopsies on children, and the required general anaesthetic to perform them, cost around €1,000 per patient.”

https://www.healtheuropa.eu/coeliac-disease-are-biopsies-needed-for-childhood-diagnoses/97438/

[docaz]

1 hour ago, cyclinglady said:

While your points are valid, I suspect that saving money has a bit to do with it too.  

“The new guidance, published in the Journal of Paediatric Gastroenterology and Nutrition, could save millions of euros in direct healthcare costs each year as biopsies on children, and the required general anaesthetic to perform them, cost around €1,000 per patient.”

https://www.healtheuropa.eu/coeliac-disease-are-biopsies-needed-for-childhood-diagnoses/97438/

I do not think that saving money is a bad thing.

If the primary motive is to save money and endanger someone's health that would be a problem but if something makes scientifically sense and saves money, I think that we should applaud that because it makes healthcare more accessible. 

I remember learning something from one of my teachers during residency something that stuck with me forever: "Do not ask for a test that will not influence your decision of treatment. Not only is it wasteful but it causes possible pain and might involve risks and keep in mind loss of time to the patient." 

I had that experience when my own son and my daughter were both scheduled to have biopsies and I asked our doctor the question how the biopsy would influence the diagnosis and treatment. He thought about it and because my daughter's numbers were so high he decided to cancel that biopsy because she would have had to go on a gluten-free diet regardless what the biopsy would show.  A baseline biopsy would also not be that meaningful because there are so many changes happening with children. I am happy that my daughter did not have to undergo a procedure under general anesthesia regardless what the cost would have been. My son's numbers were just a little above normal and he did have the biopsy. 

 

[nickibeaks]

58 minutes ago, docaz said:

I do not think that saving money is a bad thing.

If the primary motive is to save money and endanger someone's health that would be a problem but if something makes scientifically sense and saves money, I think that we should applaud that because it makes healthcare more accessible. 

I remember learning something from one of my teachers during residency something that stuck with me forever: "Do not ask for a test that will not influence your decision of treatment. Not only is it wasteful but it causes possible pain and might involve risks and keep in mind loss of time to the patient." 

I had that experience when my own son and my daughter were both scheduled to have biopsies and I asked our doctor the question how the biopsy would influence the diagnosis and treatment. He thought about it and because my daughter's numbers were so high he decided to cancel that biopsy because she would have had to go on a gluten-free diet regardless what the biopsy would show.  A baseline biopsy would also not be that meaningful because there are so many changes happening with children. I am happy that my daughter did not have to undergo a procedure under general anesthesia regardless what the cost would have been. My son's numbers were just a little above normal and he did have the biopsy. 

 

It’s refreshing that a physician taught that mentality to you! It often feels like doctors are so busy juggling other priorities that patients aren’t really considered very high in the equation even though we are kind of the point of the whole system existing in the first place ?

[Zenith]

On ‎3‎/‎4‎/‎2020 at 5:01 PM, nickibeaks said:

Just so frustrated today. I had two different blood tests over the past month from different companies while re introducing gluten, DHP IgG positive and TTG IgA positive on the second.

still had to wait for my biopsy because it’s arbitrarily important in diagnosis, fine. I asked if we could do a capsule endoscopy instead because I have extreme tenderness in my lower abdomen as well as the appendix area, and I have had a negative colonoscopy before because that isn’t where any of my pain is. No, insurance requires the endoscopy.

Well 250 dollars later for a test I knew was useless... my endoscopy was today and they come in saying, “congrats it all looks fine! We will see what the biopsies say in a week” I can’t start the capsule endoscopy until those results come back so I get to keep eating gluten and feeling like s$#&.

the lack of sensitivity on the part of doctors to the fact that to people with an chronic undiagnosed illness “congrats we found nothing” is actually super frustrating and disheartening news, especially when two positive blood tests logically seems like enough info to work with already.

its just not a great day today.

Exactly tests are ENOUGH.  I am NOT about to go to any mainstream docs to get a  "proper" diagnosis.  I am my OWN doc. OR I go to N.D. docs but they are kinda worthless too. It is all common sense.   I think I would know if I had a lot of damage to my villi.  I know I have some damage as far as still getting GERD if I jump on a trampoline and I still get some IBS. But I just got glutened two Fridays ago and I think my body is still trying to get over it.  I could NOT go back to eating a bunch of bread and gluten. I would probably die. I get hardcore stomach pains. I would vomit and everything else.   My  Natural path doc found my celiacs by luck through the saliva hormone panel test in 2017. End of story, that is all I needed. Well for two years later anyway. I didn't believe her so I kept on eating gluten till NOV 2019.  lol   ' till the symptoms got so bad.

[Wheatwacked]

I believe it safe to say that there are no health benefits to eating gluten. The benefit of a celiac diagnosis is that celiac causes a comorbidity with malabsorption syndrome and subsequent vitamin and mineral deficiencies. With diagnosis you know your risk. Unfortunately the medical profession continues to ignore this proven fact. Many mainstream doctors still believe, as they are taught, that gluten-free is a diet preference. It is a "lifestyle choice", as my prostate doctor stated while ignoring that my prostate has shrunk and is no longer an issue since I began a gluten-free diet. He still wants to do a biopsy. Thanks, but no thanks. There are at least 13 different essential vitamins and minerals that the NIH (the people that set the RDA's) recognizes that a celiac diagnosis puts that individual at high risk of deficiency.

According to the Merck Manual:  https://www.merckmanuals.com/professional/gastrointestinal-disorders/malabsorption-syndromes/celiac-disease

Quote

 

Treatment

• Gluten-free diet

• Supplements to replace any serious deficiencies

 

•  

[docaz]

2 hours ago, Wheatwacked said:

I believe it safe to say that there are no health benefits to eating gluten. The benefit of a celiac diagnosis is that celiac causes a comorbidity with malabsorption syndrome and subsequent vitamin and mineral deficiencies. With diagnosis you know your risk. Unfortunately the medical profession continues to ignore this proven fact. Many mainstream doctors still believe, as they are taught, that gluten-free is a diet preference. It is a "lifestyle choice", as my prostate doctor stated while ignoring that my prostate has shrunk and is no longer an issue since I began a gluten-free diet. He still wants to do a biopsy. Thanks, but no thanks. There are at least 13 different essential vitamins and minerals that the NIH (the people that set the RDA's) recognizes that a celiac diagnosis puts that individual at high risk of deficiency.

According to the Merck Manual:  https://www.merckmanuals.com/professional/gastrointestinal-disorders/malabsorption-syndromes/celiac-disease

•  

It is true that there are no direct benefits to eating gluten an it is true that the awareness of gluten-free diets within the medical profession has lagged behind. This was the case in particular among clinicians who are not directly involved with nutrition such as surgical specialists but that has drastically changed over the last few years. On the other hand there is an opinion that gluten is detrimental for everybody not just people with celiac disease and gluten sensitivity and while there are some loud voices supporting that opinion, this has not been accepted in mainstream medicine in particular because some of the foods (not all)  that are used to substitute gluten are in fact not nutritious and have high caloric content causing obesity. 

 

[Wheatwacked]

On 3/18/2020 at 10:26 AM, docaz said:

some of the foods (not all)  that are used to substitute gluten are in fact not nutritious and have high caloric content causing obesity. 

I believe you wish you could have a donut, still addicted, because you appear to be defending wheat. There was a clinical trial: "In 2013, scientists at Careggi University Hospital in Florence decided to see if health markers changed when people switched between eating modern wheat and KAMUT® brand khorasan wheat" .https://wholegrainscouncil.org/blog/2017/12/health-studies-kamut®-wheat-vs-modern-wheat People who are gluten-free even though not celiac and are now obese and sick were likely obese and sick prior to gluten-free. Aside from Celiac Disease there are 200 other symptoms and diseases that show significant improvement on gluten-free. If the food industry must stop using it's most profitable product they will replace it with something else profitable. High fructose corn syrup to replace natural sugars and real fat. And then market as low fat therefore "Heart Healthy". Fat makes you satiated quicker and lasts longer so you eat less. Not enough fat makes you wrinkly?

I watch as family and friends, most not diagnosed with celiac but who are gluten-free stay stable or even get healthier, while those not gluten-free spend more and more on prescriptions and surgeries and multiple illnesses and get constantly sicker. And I perceive my own health as better than I was thirty years ago.

[docaz]

2 hours ago, Wheatwacked said:

I believe you wish you could have a donut, still addicted, because you appear to be defending wheat. There was a clinical trial: "In 2013, scientists at Careggi University Hospital in Florence decided to see if health markers changed when people switched between eating modern wheat and KAMUT® brand khorasan wheat" .https://wholegrainscouncil.org/blog/2017/12/health-studies-kamut®-wheat-vs-modern-wheat People who are gluten-free even though not celiac and are now obese and sick were likely obese and sick prior to gluten-free. Aside from Celiac Disease there are 200 other symptoms and diseases that show significant improvement on gluten-free. If the food industry must stop using it's most profitable product they will replace it with something else profitable. High fructose corn syrup to replace natural sugars and real fat. And then market as low fat therefore "Heart Healthy". Fat makes you satiated quicker and lasts longer so you eat less. Not enough fat makes you wrinkly?

I watch as family and friends, most not diagnosed with celiac but who are gluten-free stay stable or even get healthier, while those not gluten-free spend more and more on prescriptions and surgeries and multiple illnesses and get constantly sicker. And I perceive my own health as better than I was thirty years ago.

This is a completely different discussion if gluten should exist and be consumed by healthy individuals.

The "trial" you quote would never pass a peer review because it is embarrassingly awful. It is riddled with the trademark Kamut and the "independent" study is generously funded guess by who? Twenty people were studied over three  8 weeks periods. Really? There are no inclusion or exclusion criteria. We have no idea if the subjects were healthy, sick, alive etc.. A decrease in cholesterol level by 7% is laughable. Normal total cholesterol levels have a huge range of 125 to 200 and the LDL less than 100 so measly 8% on 10 people (half the total group) is just a joke. There are many more flaws. 

Speaking about profitable, the study was clearly a marketing paper to make "Kamut" profitable. If you change your entire life style based on the results of this study and what you have observed from family and friends that is your choice and I am sure I can not convince you otherwise but the general medical literature does not support this opinion. On the contrary, a gluten-free diet comes with physical, financial and also emotional challenges. I do not share the opinion of a global conspiracy theory.

In the meantime, I am enjoying my donuts because I am not celiac (but two of my children are and fortunately, I was able to greatly enhance their live style based on something that has many studies in peer reviewed international papers). I do not defend wheat because I could care less to defend it and I am not addicted because I can do fine without donuts them but I very much enjoy them. Obviously I do not subscribe to that study and my observation from my family and friends who are doing just fine eating bread on a daily basis because that was the culture I grew up in (in eastern Europe but the grain is the same as here). As mentioned above, I do not subscribe to the conspiracy theory that the gluten industry is using gluten as a profit machine because all the little bakeries next door would not be powerful enough to do that and while the wheat industry might be consolidated and indeed powerful, the end-producers are very fragmented and people just like bread and cakes as they have liked for thousands of years. I realize that there are strong anti-gluten opinions and there are pro-gluten opinions, and this is a difference of opinions that will stay for sure unresolved because proponents of both sides are very passionate.

[Wheatwacked]

...And the world wide obesity epidemic is simply gluttony and laziness.

[docaz]

4 hours ago, Wheatwacked said:

...And the world wide obesity epidemic is simply gluttony and laziness.

I do not know the answer to this very complex question. It is much to simplistic to consider it all caused by gluten and wheat growers. 

Refined sugars and more sedentary life style? Maybe

[nickibeaks]

4 hours ago, docaz said:

I do not know the answer to this very complex question. It is much to simplistic to consider it all caused by gluten and wheat growers. 

Refined sugars and more sedentary life style? Maybe

 

8 hours ago, Wheatwacked said:

...And the world wide obesity epidemic is simply gluttony and laziness.

There is way more to obesity than personal choice and "laziness" 

it is a symptom of broader disease, and this mischaracterization compounds people's health challenges because of the misconception that people with malnutrition conditions are always frail and thin. They are finding that more people with celiac present as obese than underweight.

[knitty kitty]

High caloric malnutrition causes obesity.  The vitamins used to enrich your gluten products are often synthetic and have reduced bioavailability.  There's questions as to the quantity of vitamins added.  The RDA's are set too low.  Subclinical nutritional deficiencies can occur.  Especially thiamine deficiency.  

Thiamine deficiency and obesity:

https://www.ncbi.nlm.nih.gov/pubmed/22116701

Vitamin D deficiency and obesity:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6682882/

Niacin helps regulate fats in obesity...

https://www.ncbi.nlm.nih.gov/pubmed/31343843

And one more for fun....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4549666/

Hope this helps.

Edited March 21, 2020 by knitty kitty
Added link