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LP023

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trents Grand Master
4 minutes ago, LP023 said:

 It would be nice to get accurate information that is the same across all sources on the damage done by cross contamination.

For reasons I've already explained, that really isn't possible. Too much variation in individual sensitivity. It's something you have to feel your way through and discover from experience. Getting follow-up antibody testing is also helpful for those who aren't particularly sensitive such that lack of symptoms may not be a reliable indicator of inflammation since it can be sub clinical. By way of analogy, doctors prescribe different doses of medication to different people because not all respond to the same dose the same way.


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trents Grand Master
10 minutes ago, LP023 said:

I’m not sensitive to it now. Im reading and being told the longer I go on a gluten free diet though the more sensitive I will become. I can eat a whole pizza now and not hurt. But from what I’m being told is after going gluten free a bread crumb eaten on accident can cause severe pain and sickness. I’ve gone gluten free and am overly caution of cross contamination. I’ve also read and heard that gluten causes damage even without symptoms. My question is those of us who don’t have symptoms may not have the level of damage in our intestines that someone would have if they have bad symptoms. Maybe the level of sensitivity correlates with the amount of damage and someone who doesn’t hurt from gluten may not have the same internal response as someone who does hurt. Those of us who aren’t sensitive to it could probably relax on cross contamination if we could figure out if the damage to our insides doesn’t happen from cross contamination. 

Would you really be willing to allow a small, sub-clinical (asymptomatic) amount of inflammation to be going on in your gut just so you could be less vigilant and indulge yourself now and then? Yes, it is true that once you withdraw gluten from the diet you become more sensitive to it over time but is the alternative acceptable? Do you want to continue to damage your health, even if it is incremental?

LP023 Contributor
19 minutes ago, trents said:

For reasons I've already explained, that really isn't possible. Too much variation in individual sensitivity. It's something you have to feel your way through and discover from experience. Getting follow-up antibody testing is also helpful for those who aren't particularly sensitive such that lack of symptoms may not be a reliable indicator of inflammation since it can be sub clinical. By way of analogy, doctors prescribe different doses of medication to different people because not all respond to the same dose the same way.

I guess that’s the point I’m trying to make. All advice I’ve gotten is avoid it at all cost. Switch my house over to gluten free. Never eat out because of cross contamination and pretty much stress myself out to the point that the stress is actually worse on my body than the gluten. When in reality all of that may not be necessary. The same advice isn’t good for all of us. 

LP023 Contributor
16 minutes ago, trents said:

Would you really be willing to allow a small, sub-clinical (asymptomatic) amount of inflammation to be going on in your gut just so you could be less vigilant and indulge yourself now and then? Yes, it is true that once you withdraw gluten from the diet you become more sensitive to it over time but is the alternative acceptable? Do you want to continue to damage your health, even if it is incremental?

How do we know that all people have the same amount of inflammation? I’m not saying I should indulge. I haven’t. I’m saying that maybe telling people that a bread crumb or cross contamination will cause the same damage to everyone may not be the best advice. Switching my whole house to gluten free and going to extreme measure to avoid cross contamination, and having to use separate utensils because gluten doesn’t “wash away, it just spreads when you try to wash it off” (as I’ve seen on several posts) may not be necessary for all of us and that advice may cause more harm than good mentally for a lot of people.

trents Grand Master
(edited)

No one is saying that all people have the same amount of inflammation. What we are saying is that any inflammation is unacceptable and could result in serious health problems over time. "Silent" celiacs are those who usually are not experiencing great damage to their small bowel villi yet, in other words they are earlier in the damage curve. They often cease to become silent given more time.

It seems to me that you are looking for pat answers to things that don't have pat answers. I don't know that there is anything else we can tell you so you will need to make the best decision you can based on what information you have given your situation.

Edited by trents
Wheatwacked Veteran

Personally I believe that it is dependant on your individual vitamin D  intake. Vitamin D is the Command and Control Central of the Immune System.  We evolved to survive a vitamin D range of 19 - 100. Before factories and offices we all spent most of the day in the sun. A group of lifeguards in August in Israel all ranged between 70 and 90. That is our homeostatic level. 96% of the population has less than 50 ng/ml.

Newer research is finding vitamin D receptors in virtually every system. So a low level of D is leaving a lot of jobs with no workers.

Over the years, as my D approached 80 ng/ml where it holds steady now even if I skip a few weeks taking10,000 IU a day, I found my gluten intolerance to decrease. It means I have enough stored that my immune system can neutralize small amounts of gluten without going into overdrive. I have enough workers to monitor and control the patroling band of T cells withot starting a bio riot.  I counted 19 lifetime symptoms that improved with GFD most not digestive.

So yes, every one is going to react differently.  Do your best, adjust your diet and get tested periodically to monitor progress. Most important don't freak out over it.  It is not instant death. It's the slow long term effects that will get you misdiagnosed with something whose treatment protocol will kill you.

 

Quote

In fact, 2013–2016 NHANES data showed that 92% of men, more than 97% of women, and 94% of people aged 1 year and older ingested less than the EAR of 10 mcg (400 IU) of vitamin D from food and beverages ...Four percent had levels higher than 125 nmol/L (50 ng/mL)....Because vitamin D is fat soluble, its absorption depends on the gut’s ability to absorb dietary fat [4]. Fat malabsorption is associated with medical conditions that include some forms of liver disease, cystic fibrosis, celiac disease, Crohn’s disease, and ulcerative colitis The FNB committee that established DRIs for vitamin D found that the evidence was inadequate or too contradictory to conclude that the vitamin had any effect on a long list of potential health outcomes (e.g., on resistance to chronic diseases or functional measures), except for measures related to bone health. https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

 

Wheatwacked Veteran
2 hours ago, LP023 said:

It would be nice to get accurate information that is the same across all sources

Yes it would.

17 hours ago, LP023 said:

If it’s that serious they wouldn’t wait 4 months and tell people to keep eating it for 4 months.

You would think. 

I went through the stages of mourning.  Anger is one of the first.


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KennaH Rookie
3 hours ago, LP023 said:

I’m not sensitive to it now. Im reading and being told the longer I go on a gluten free diet though the more sensitive I will become. I can eat a whole pizza now and not hurt. But from what I’m being told is after going gluten free a bread crumb eaten on accident can cause severe pain and sickness. I’ve gone gluten free and am overly caution of cross contamination. I’ve also read and heard that gluten causes damage even without symptoms. My question is those of us who don’t have symptoms may not have the level of damage in our intestines that someone would have if they have bad symptoms. Maybe the level of sensitivity correlates with the amount of damage and someone who doesn’t hurt from gluten may not have the same internal response as someone who does hurt. Those of us who aren’t sensitive to it could probably relax on cross contamination if we could figure out if the damage to our insides doesn’t happen from cross contamination. 

Wow! Can’t believe you can eat gluten with no negative consequences. Saw my biopsy results and immediately stop gluten. Doctor told me to eat gluten for a week for blood test. Oh my goodness! 3 month later and I know within 1 day that exposed myself (honey nut cheerios) and I was sick for days. Brain fog, fatigue, diarrhea, stomach pains, etc. I agree my severity of damage was moderate to severe so that, I believe makes a difference. I agree no symptoms make limited amount from cross contamination and small exposure tolerable or symptom free. 

KennaH Rookie
3 hours ago, LP023 said:

I guess that’s the point I’m trying to make. All advice I’ve gotten is avoid it at all cost. Switch my house over to gluten free. Never eat out because of cross contamination and pretty much stress myself out to the point that the stress is actually worse on my body than the gluten. When in reality all of that may not be necessary. The same advice isn’t good for all of us. 

I agree! You have to do what works for you. Learning more about experience and studies enables you to choices.  You try and try again! I agree about stress and the affect on your body. My biggest trigger is stress. Jus do what is best for you like everything else in life. 

Russ H Community Regular
22 hours ago, LP023 said:

Many people have it their whole lives with mild symptoms and aren’t diagnosed until 60s or later. All of the studies I’ve read say the number of people undiagnosed is astronomical. Many people are diagnosed at an early age never diet and are in there 50s and 60s and healthy. I just don’t think we know enough about this disease. The contradictions in medical journals and online is unreal especially regarding  cross contamination. One thing I’ve really been perplexed by is people say only a crumb will cause severe harm and months to heal in the intestines. But when someone has to take the gluten challenge they have to eat gluten for 6 or more (depending on who you ask or what article you read) weeks to get an accurate diagnosis. 

I'd like to see actual figures and sources for your assertions. About 1 in 4 people with coeliac disease are diagnosed.

The safe daily limit for most people is 10 mg of gluten although some people are more sensitive. This is equivalent to a piece of bread the size of a small pea. Regular exposure to 2 to 3 times this amount leads to an immune response, raised antibodies and damage to the gut. Sure, if you want to do this that is your risk but expert advice is not to do this. I would say that exposure comes from a combination of cross-contamination, errors and 'cheating'.

However, if an adult were diagnosed with coeliac disease through blood work but had no symptoms and a negative gut biopsy, I can understand their remaining on a normal diet as it is quite onerous following a gluten-free diet.

LP023 Contributor
1 hour ago, Russ H said:

I'd like to see actual figures and sources for your assertions. About 1 in 4 people with coeliac disease are diagnosed.

The safe daily limit for most people is 10 mg of gluten although some people are more sensitive. This is equivalent to a piece of bread the size of a small pea. Regular exposure to 2 to 3 times this amount leads to an immune response, raised antibodies and damage to the gut. Sure, if you want to do this that is your risk but expert advice is not to do this. I would say that exposure comes from a combination of cross-contamination, errors and 'cheating'.

However, if an adult were diagnosed with coeliac disease through blood work but had no symptoms and a negative gut biopsy, I can understand their remaining on a normal diet as it is quite onerous following a gluten-free diet.

It is estimated that 83% of people with celiacs are undiagnosed. 

Just now, LP023 said:

It is estimated that 83% of people with celiacs are undiagnosed. 

They would literally need to have people eat this amount and other amounts and do repeat scopes to prove this over and over to confirm it.

LP023 Contributor
22 hours ago, Wheatwacked said:

Some people go years, even with obvious symptoms, yet the diagnostic test show no evidence of celiac disease, have numerous procedures, like gall bladder surgergy, etc that work temporarily only to find 10 or more years later it was celiac disease all along

 

Why would removing the gallbladder improve symptoms temporarily? If it is gluten causing the pain then the gallbladder being removed shouldn’t help. 

Scott Adams Grand Master
2 hours ago, LP023 said:

It is estimated that 83% of people with celiacs are undiagnosed. 

I agree that there is a high number of people with celiac disease who are undiagnosed, and this number is likely a good estimate. There are also ~20-25% of people in the USA who are, in some form or another, on a gluten-free diet, so it is clear that those with non-celiac gluten sensitivity (~10% of the population) and those who just feel better not eating gluten (perhaps another 10%), are really driving the gluten-free food business now.

LP023 Contributor
On 3/11/2023 at 4:28 PM, Russ H said:

I'd like to see actual figures and sources for your assertions. About 1 in 4 people with coeliac disease are diagnosed.

The safe daily limit for most people is 10 mg of gluten although some people are more sensitive. This is equivalent to a piece of bread the size of a small pea. Regular exposure to 2 to 3 times this amount leads to an immune response, raised antibodies and damage to the gut. Sure, if you want to do this that is your risk but expert advice is not to do this. I would say that exposure comes from a combination of cross-contamination, errors and 'cheating'.

However, if an adult were diagnosed with coeliac disease through blood work but had no symptoms and a negative gut biopsy, I can understand their remaining on a normal diet as it is quite onerous following a gluten-free diet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/
this isn’t the article I was looking for but it is interesting and there are several more.

On 3/11/2023 at 12:55 PM, trents said:

No one is saying that all people have the same amount of inflammation. What we are saying is that any inflammation is unacceptable and could result in serious health problems over time. "Silent" celiacs are those who usually are not experiencing great damage to their small bowel villi yet, in other words they are earlier in the damage curve. They often cease to become silent given more time.

It seems to me that you are looking for pat answers to things that don't have pat answers. I don't know that there is anything else we can tell you so you will need to make the best decision you can based on what information you have given your situation.

Interesting article and there are many more. 

LP023 Contributor
On 2/27/2023 at 12:28 PM, Scott Adams said:

I've never heard this theory before, and you've referred to a "study" or article on this, yet you have not posted a link to it. Can you share this article with us?

Not the one I read earlier but this is interesting and I’ve found many more similar to this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/

trents Grand Master
(edited)
1 hour ago, LP023 said:

Not the one I read earlier but this is interesting and I’ve found many more similar to this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/

"Our results are that in a real-life scenario, a group of celiac disease patients on long-term gluten intake showed no significant clinical symptoms or small bowel damage, thus suggesting that a degree of tolerance towards gluten consumption can be reached."

Can be reached or can be maintained? After three years of mostly gluten free eating my villi were not healed. After going truly gluten free, they did heal but I became much more sensitive to gluten such that any significant exposure makes me violently ill, even as much gluten as would be found in the small bowl of egg drop soup they serve as an appetizer at a Chinese restaurant.

"Among the noncompliant patients, 57% did not present any histological alteration . . ."

What about the other 43%? And although the histology changes may not have been enough to change the Marsh score for any in the group, it was enough to indicate a negative impact on the gut lining cells.

Edited by trents
shadycharacter Enthusiast
5 hours ago, LP023 said:

Not the one I read earlier but this is interesting and I’ve found many more similar to this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/

They ate on average 185.2 g gluten per year, on average around 500 mg a day. That corresponds to roughly 10 ml or 6 g of wheat flour a day, significantly less than what is recommend for a gluten challenge. Because you can't make an average sized slice of bread from a flat teaspoon of flour.

(Numbers used: 1 ml wheat flour weighs 0.6 g, all purpose wheat flour is about 10 % protein, most of which is gluten, so about 50 mg gluten per ml flour. A flat teaspoon is 5 ml.)

Those who coped best were perhaps those who ate less than 500 mg a day? 

Wheatwacked Veteran
(edited)
On 3/11/2023 at 7:02 PM, LP023 said:

Why would removing the gallbladder improve symptoms temporarily? If it is gluten causing the pain then the gallbladder being removed shouldn’t help. 

The first problem is that the Celiac Disease diagnosis is based only on villi damage of Marsh III presuming that Celiac Disease is only a gastrointestinal issue. That is changing but for the most part is still common opinion.

Quote

 

How Celiac Disease May Affect Your Risk for Gallbladder Disease  In fact, it's fairly common for people with celiac disease to say they had their gallbladder removed either before or after diagnosis. A few people have said they believe their celiac disease was triggered by gallbladder removal, ...

Studies in people who have celiac disease but who aren't following the gluten-free diet have found problems with gallbladder emptying following a fatty meal . This problem can make the person more susceptible to developing the type of gallstones made from cholesterol.

Researchers in Italy studied 19 people with celiac disease who were not yet following the gluten-free diet and found that their gallbladders emptied more slowly than the gallbladders in people without the condition.

 The researchers then studied gallbladder function in the same people once they had gone gluten-free, and found that gallbladder emptying was normal.

Celiac disease impacts your liver, which is responsible for making the bile stored by your gallbladder. For example, celiac is linked to abnormal liver tests and to a form of liver disease called autoimmune hepatitis, in which your immune system attacks your liver.10 In several reported cases, a celiac diagnosis and subsequent switch to the gluten-free diet repaired liver damage in people who previously had been candidates for a liver transplant.

 

 

Edited by Wheatwacked
Scott Adams Grand Master

Long before the USA had standards for using the term "gluten-free" on product labels, the Codex Alimentarius had standards in Europe, and they were 200ppm for well over a decade. Many products there were made with wheat starch that contained close to 200ppm, and follow up of those on such diets indicated it was a safe level for most of them. 500ppm is still a very small amount, and I suspect a majority of celiacs may tolerate this level, but not all. Obviously it's best to just stay 100% gluten-free.

Russ H Community Regular
14 hours ago, LP023 said:

Not the one I read earlier but this is interesting and I’ve found many more similar to this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/

Some people are certainly more sensitive to gluten than others. The weakness of that study is selection bias. 8% of the subjects stated that they occasionally consumed gluten, and these are likely to be those less sensitive to gluten. This does not mean that all people with coeliac can occasionally consume gluten without ill effect. As the authors state, regularly consuming < 10 mg of gluten is considered safe for most people. Note also that the group occasionally consuming gluten had raised levels of anti-tTG2, a key marker of active coeliac disease, even if their intestinal biopsies were normal.

Quote

This consideration suggests that it is the timing of the consumption (chronic vs. sporadic) more than the quantity of gluten that can drive a significant immunological and histological response.

 

There is a good review of the matter by the UK Food Standards Agency here, concluding that daily consumption should be less than 50 mg:

https://www.food.gov.uk/research/food-allergy-and-intolerance-research/systematic-review-on-tolerable-levels-of-gluten-for-people-with-coeliac-disease

There is an excellent study here, showing that 50 mg per day of gluten leads to intestinal damage, and in one case just 10 mg per day caused a relapse in symptoms.

https://pubmed.ncbi.nlm.nih.gov/17209192/

I think that deliberately consuming gluten containing foods is risky and in any event should not be done before the gut is fully healed.

LP023 Contributor
10 hours ago, shadycharacter said:

They ate on average 185.2 g gluten per year, on average around 500 mg a day. That corresponds to roughly 10 ml or 6 g of wheat flour a day, significantly less than what is recommend for a gluten challenge. Because you can't make an average sized slice of bread from a flat teaspoon of flour.

(Numbers used: 1 ml wheat flour weighs 0.6 g, all purpose wheat flour is about 10 % protein, most of which is gluten, so about 50 mg gluten per ml flour. A flat teaspoon is 5 ml.)

Those who coped best were perhaps those who ate less than 500 mg a day? 

If it takes 8 weeks of gluten for a gluten challenge to cause enough damage why do we worry about cross contamination once in a blue moon. All I’ve seen on the internet is cross contamination will cause damage that will take months to heal and raise you risk of disease. I’m sorry but I’m not buying it. I do believe there are people who are super sensitive to it and they do have symptoms but it’s usually after going gluten free for a long time and then when they do get cross contaminated they are deathly ill. I don’t think it’s it’s impossible for those of us who aren’t highly sensitive to it to eat a meal once every few months and cause no damage. It may actually be better for us so that our body doesn’t freak out and attack when we are cross contaminated on accident. It will happen. We can’t avoid it 100%. 

LP023 Contributor
7 hours ago, Wheatwacked said:

The first problem is that the Celiac Disease diagnosis is based only on villi damage of Marsh III presuming that Celiac Disease is only a gastrointestinal issue. That is changing but for the most part is still common opinion.

 

I guess for me I don’t have symptoms. I get an upset stomach every few months. Nothing major. I know if I go completely gluten free though I may become more sensitive to it and cause more problems than good. We can’t avoid it 100% and I’d rather not be deathly I’ll because a steak was cooked on a surface with a bread crumb on it. Right now I could eat a whole pizza with no symtoms. My TTG was barely high. I went gluten free after finding out. I feel no different. Constipation is worse. Probably because I’m missing the foods I need to remedy that. We do need the nutrients from these foods we are told to cut out. They didn’t do a gene test or anything else. I’ll consider a biopsy at a later time and do the gluten challenge if I decide to keep following the gluten free diet. 

LP023 Contributor
1 hour ago, Russ H said:

Some people are certainly more sensitive to gluten than others. The weakness of that study is selection bias. 8% of the subjects stated that they occasionally consumed gluten, and these are likely to be those less sensitive to gluten. This does not mean that all people with coeliac can occasionally consume gluten without ill effect. As the authors state, regularly consuming < 10 mg of gluten is considered safe for most people. Note also that the group occasionally consuming gluten had raised levels of anti-tTG2, a key marker of active coeliac disease, even if their intestinal biopsies were normal.

 

There is a good review of the matter by the UK Food Standards Agency here, concluding that daily consumption should be less than 50 mg:

https://www.food.gov.uk/research/food-allergy-and-intolerance-research/systematic-review-on-tolerable-levels-of-gluten-for-people-with-coeliac-disease

There is an excellent study here, showing that 50 mg per day of gluten leads to intestinal damage, and in one case just 10 mg per day caused a relapse in symptoms.

https://pubmed.ncbi.nlm.nih.gov/17209192/

I think that deliberately consuming gluten containing foods is risky and in any event should not be done before the gut is fully healed.

I agree on the fully healed part. I’m just tired of being bombarded with advice online about how one time of being cross contaminated will cause damage that will last months. The gluten challenge takes 8 weeks to show enough damage to test positive. How can being cross contaminated or eating a steak cooked on grill with a bread crumb on it cause damage once in while cause damage?The misinformation is ridiculous. I truly believe a lot of people have crohns and other issues. They assume they’ve been glutened when in fact they are having a flare. My mom went 12 years being misdiagnosed with crohns (scopes), ulcerative colitis, celiacs (biopsy), and ibs. She finally found a doctor at the Mayo Clinic that figured out she had mast cell. Once treated for that she’s been fine. She never had celiacs or any other disease that they supposedly proved with tests. A lot of these diseases tend to overlap. In her case she went on a diet for mast cell. Takes medication and now the damage to the villi is gone. There is a lot to learn but it seems that most people with celiacs refuse to believe anything that doesn’t line up with the advice and science that hasn’t changed in forever. The thing I’ve noticed is celiacs tend to get really defensive. I even had one person tell me if I used the same pots and pans that my family used that I would get glutened and that the gluten doesn’t wash away it just spreads. If that were the most people with celiacs would never survive and that advice is the complete opposite of what the experts I’ve talked to gave me. It washes away. 

LP023 Contributor
3 hours ago, Scott Adams said:

Long before the USA had standards for using the term "gluten-free" on product labels, the Codex Alimentarius had standards in Europe, and they were 200ppm for well over a decade. Many products there were made with wheat starch that contained close to 200ppm, and follow up of those on such diets indicated it was a safe level for most of them. 500ppm is still a very small amount, and I suspect a majority of celiacs may tolerate this level, but not all. Obviously it's best to just stay 100% gluten-free.

Possibly. But we have people turning their lives upside down and panicking trying to avoid the tiniest speck of flour that would be perfectly fine consuming a piece of toast once a month. There are people with families removing all gluten and washing their kitchen down because of the extreme advice they’re getting online. We do need the nutrition from the foods we are removing. There is a point where the stress is worse than the disease. That has been the most alarming thing to me. People with celiacs for the most part don’t seem to be mentally well. This is destroying them mentally. It’s sad. I cut out gluten and honestly haven’t missed it. I don’t even buy the gluten free bread, pasta, cake mixes etc. I just started eating meat, vegetables and fruit. I’m not trying to find an excuse to eat it again.  I just whole heartedly believe we’re getting a lot of bad advice. 

herminia Apprentice
On 2/24/2023 at 8:41 PM, LP023 said:

I came across several studies today that said a gluten free diet may not be the best option for someone with celiacs who are asymptomatic. I’m not sensitive to eating gluten. I have been gluten free for over a month now. The studies say that those who are asymptomatic and do not have severe damage may be doing more harm than good by going gluten free because those who go completely gluten free become more sensitive over time when they consume tiny amounts or are cross contaminated. After being gluten free, a tiny amount of gluten actually causes more damage than consuming small amounts each day. I have also been told over and over that a crumb of bread does as much damage as a whole piece. There are several studies that do not support this. Since learning I have celiacs (family history) I tried to learn as much as possible and the celiac community seems to be doom and gloom. I’ve asked several questions on several platforms about cross contamination of pots and pans and kitchen safety. I do realize people have different levels of sensitivity (gets worse after going gluten free) but the one size fits all advice doesn’t seem to be accurate. I reached out to experts and GIs and was told that sharing pots and pans are safe as long as washed and that I can have a mixed kitchen. Just use common sense. Wash hand and wipe things down. Don’t share a toaster. I truly wonder if the advice given is doing more harm than good to a lot of us. The stress over the extreme measures we are told to follow is killing us faster than gluten. Google is an enemy. It brings up one story after another of the risks of cancer and other diseases but you truly look at the statistics it’s not much higher than someone without celiacs and one study says one things and another says something totally different. If one says celiacs are 10 times higher to develop cancer you will find 30 more that has a different number. Thoughts? 

My personal experience (now76 yo) suggests that I have a sensitivity to gluten, that occasional exposure is not harmful TO ME, as I don't find myself wracking with the pain and fatigue previously experienced before diagnosis. I don't go to extremes in my home, other than family is forbidden to leave cookies, cake, and pie on the counter. I am always looking for new gluten free items, not always available, and will sometimes eat something that I know I will pay for if eaten in excess. I deal with it,  but not to extremes.

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      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
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