trents

I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed.

Welcome to the forum, @Marie70!
The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject:
Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet.
Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?" 
When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.

Welcome to the forum, @Marie70!
The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject:
Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet.
Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?" 
When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.

Welcome to the forum, @JenFur!
You must be relatively new to the celiac journey.
I wish it were as simple as just having to cut out gluten and all our gut issues magically disappear.
It is very common for those with celiac disease to develop intolerance/sensitivity to other foods. Often it is because the protein structure of some other foods resembles that of gluten. Sometimes it is because damage the damage done to the gut lining by celiac disease wipes out cells that produce enzymes needed to break down those foods. Sometimes it is because the "leaky gut syndrome" associated with celiac disease causes the immune system to incorrectly identify other food proteins as threats or invaders.
The two most common non-gluten foods that cause trouble for a lot of celiacs are dairy and oats. But soy, eggs and corn are also on that list.
Sometimes these non-gluten food intolerances disappear with time and the healing of the villous lining of the small bowel.

@JenFur, if this is microwave popcorn you are using, check for added ingredients that could be causing a reaction such as flavorings which might be hidden sources of gluten.

Usually, the blood testing is done first and the endoscopy/biopsy follows for confirmation if there are positive antibody test scores. Historically, the endoscopy with biopsy has been considered to be the gold standard for diagnosing celiac disease. If the tTG-IGA scores are very high (5x-10x normal), some doctors will forego the endoscpoy/biopsy and grant a celiac disease diagnosis without it. So, if you are starting with the endoscopy/biopsy that may be all you need to arrive at a diagnosis. Another possibility would be for the GI doc to do a blood draw for antibody testing on the same day you come in for the endoscopy/biopsy.

Sounds like your doctor is not very knowledgeable about celiac disease and may not be supportive of your efforts to run this down. Unfortunately, there is still a lot of ignorance in the medical community with regard to celiac disease. He/she may not even know what tests to run. Those of us who have been on the celiac journey for sometime have come to realize we need to be our own advocate and need to be appropriately assertive in order to get proper testing done. So, when the day comes for the appointment, here are some recommended tests you should discuss with your doctor that are celiac specific:
At the bare minimum, the doctor should or:
1. total IGA. This test checks for IGA deficiency. If you are IGA deficient, then next test, #2 below, will give falsely low scores and may produce a false negative.
2. tTG-IGA This is the centerpiece of celiac disease testing and is the most popular test run by doctors.
If  the doc is willing, ask for these in addition:
3. DGP-IGA
4. DGP-IGG
5. tTG-IGG
These five tests would constitute a fairly complete celiac panel and give fuller picture. What one test may miss another may catch. Here is an article giving an overview of celiac disease blood antibody testing, the relative sensitivities and accuracies of each test. The one test mentioned in this article I did not include in my list is the EMA which is not used often anymore. It is expensive to run and has largely been replaced by the tTG-IGA.
One other thing to be aware of and that is if there are positives in the antibody testing, you likely would get a referral to a GI doc who may want to do an endoscopy with biopsy of the small bowel lining to confirm the antibody testing results. You would needs to still be consuming gluten for this one as well.

Welcome to the forum @cameo674!
First, let me correct a misconception you have about celiac disease and intestinal anatomy. Celiac disease does not affect the colon. It damages the lining of the small bowel which is on the other end of the intestinal track from the colon. The small bowel, the duodenum, is the part of the intestines right below the stomach. So, your colonoscopy would not have been examining that area. The scope just won't go up that far. Examination of the small bowel is done with an endoscopy, not a colonoscopy. The go in through the mouth, the stomach and into the upper part of the intestines. 
People with celiac disease experience an autoimmune response when gluten is consumed that generates inflammation in the lining of the small bowel which, over times, wears down the millions of tiny finger-like projections that constitute this lining. We call those finger-like projections "villi" and the lining is termed the "villous lining" of the small bowel. The inflammatory response by the immune system perceiving gluten to be an invader threat produces antibodies that can be measured in the blood. This is what was what those tests were done for that you posted in your opening narrative. The villous lining of the small bowel is where all of the nutrition is absorbed from the food we eat. The constant inflammation of celiac disease over time wears down these millions and millions of tiny finger-like projections and greatly reduces the efficiency of nutrient absorption. Hence, it is common for those whose celiac disease has been undiagnosed for a long time and who continue to consume gluten develop health problems that are related to nutritional deficiencies, even though they may be eating well.
Your test results do indicate you have celiac disease. The most important of those tests you listed is the Tissue Transglutaminase (IgA) - 44.0 U/mL and it was "out of range". We abbreviate this as tTG-IGA. I take "out of range" to mean it was elevated. You did not include the reference ranges used by the lab for the tests so I am assuming "out of range" means positive or high. There are no industry standards for reference ranges for these tests. Each lab uses their own because they each build the tests a little differently or may use different units to express the results.
Normally, if any of the celiac blood antibody tests are positive, a GI doc will want to perform an endoscopy with biopsy of the small bowel lining to microscopically check for damage to the villous lining. This is confirmation of the blood antibody testing. Sometimes they will forego the endoscopy/biopsy if the tTG-IGA score is very high. But it is very important that you not begin to cut back on gluten until all testing is complete. Doing so will allow healing of the small bowel lining to begin and will likely invalidate the testing. It is recommended that people consume at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) in the weeks leading up to the endoscopy/biopsy. 
Finally, it sounds like your middle child also needs to be tested for celiac disease. A couple of studies done with rather large sample sizes in the last couple of years showed that almost 50% of first degree relatives of those with celiac disease, when tested, also had celiac disease. Many of them were "silent". That is, they were largely asymptomatic.

@Tracey Thomas, Is that the only celiac test that was run? From the magnitude of the reference range, that looks like it was the "total IGA" test to check for IGA deficiency. It is not checking for celiac disease per se. If you are IGA deficient, it can cause false negatives in the individual IGA celiac antibody tests. Were there any other celiac antibody tests run?

I would suggest you ask your doctor to order a "total IGA" test to check for IGA deficiency.

Statistically, the incidence of IBS and other bowel disorders is higher in the celiac population than it is in the general population. Still, I would take one thing at a time. There is significant reason to believe your son does have celiac disease and there is no nasty prep needed for that endoscopic procedure. Assuming that he does have either celiac disease or NCGS, it is likely that a gluten-free diet corrects his symptoms and there would be no need to pursue a lower GI and it's nasty prep. 
I would also add that the immune system of a child his age is not mature. It's in flux. Because of this, celiac disease testing can yield erratic results. And I would also add that some experts believe that NCGS can be a precursor to the development of celiac disease. If this is true, there would seem to be transition phases.
I hope you will keep us posted.

Thanks. Now it all makes sense. So, it looks like he may be IGA deficient or on the cusp of it. So, the reliability of the tTG-IGA testing is dubious. Being that the EMA is positive, my money would be on him having celiac disease, especially with the symptoms he is experiencing. The next logical diagnostic step would be to have an endoscopy/biopsy done of the small bowel lining to check for damage. Has the physician mentioned this? Sometimes they are reluctant to do this on children. Please hear this: Before you attempt to put him on a gluten-free diet or even cut back on his gluten intake, make sure you aren't planning any more testing for celiac disease. Removing gluten from his diet will sabotage any future testing. From the way you spell "coeliac" I'm guessing you are in the UK so I realize there may be stipends and follow-up healthcare benefits available to your son if there is an official diagnosis of celiac disease. But I also understand it can take many months to get a procedure in place with the backlog in your healthcare system.

As Scott said, if you go on a gluten free diet ahead of testing you can expect the test results to be negative. If you remove gluten from your diet, the inflammation in the lining of the small bowel will subside, antibody levels (what the blood tests are checking for) will drop and the mucosal lining will experience healing such that a biopsy will be normal. So, it makes no sense to me to start the gluten free diet now unless your doctor wants to see if the weak positive disappears in response to a gluten free diet.
Your Marsh 1 score indicates little to no damage has been experienced in the lining of the small bowel to this point.
Two slices of bread daily might not be sufficient to produce unequivocal test results. Recently revised "gluten challenge" guidelines are recommending at least 10 g of gluten daily (about the amount found in 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of testing, whether it be the blood antibody testing or the biopsy.
It makes more sense to me for you to increase your gluten intake for several weeks and get retested. It is not likely that doing so for that limited amount of time will produce any serious health consequences but may give you unequivocable test results and more clear direction. If you decide to do this, make sure that in addition to the tTG-IGA test, you request a "total IGA" test order to check for IGA deficiency. If you are IGA deficient, your tTG-IGA score will be artificially low. Those are, at the very minimum, the two tests that should always be ordered when a blood draw is done check for celiac antibodies. There are other tests which can be ordered as well that check for evidence in the IGG immunes response spectrum. Here is an overview: 
 

Welcome to the forum, @Morgan Tiernan!
I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis and because dermatitis herpetiformis has such a distinctive appearance with the pustules in the bumps they should recognize what it was. There is just no excuse for this! You do not mention having any GI distress so I'm sure they were discounting the possibility of celiac disease because of that.
Anyway, one thing that might be helpful to you is to look into a low iodine diet. Iodine exacerbates dermatitis herpetiformis. There is also a med called Dapsone which is effective for dermatitis herpetiformis but it needs to be used with caution as it puts stress on the liver. So, if you were taking Dapsone you would need to have your liver enzymes checked regularly.
Not every dermatologist is familiar with the correct way to biopsy dermatitis herpetiformis so I hope it was done correctly in your case. My understanding is that the samples need to be taken next to the bumps and not on the bumps. At any rate, if your biopsy is positive for dermatitis herpetiformis you have your official celiac diagnosis. By the way you spell "coeliac" I'm assuming you live in the U.K. If so, there may be some extra benefits available to you if you have an official diagnosis.
Keep us posted.

Another factor revealed in your test results is that you are IGA deficient. Look at the line: Immunoglobulin A, Qn, Serum         35 (L)     Reference range: 87 - 352
We also call that "total IGA". IGA deficiency results on in artificially low scores in the individual IGA celiac antibody test scores. In other words, the test score for the tTG-IGA would likely have been higher if you were not IGA deficient. From: 
 
IgA Levels/Deficiency Blood Test
This should always be included in any blood panel for celiac disease, but it does not test directly for celiac disease, and is done to determine the accuracy of the other blood tests. People who are IgA deficient may score lower, of have no measurable levels on certain celiac disease blood tests. This test measures the levels of Immunoglobulin A (IgA) in the bloodstream. IgA is an important antibody that plays a significant role in the immune system, particularly in protecting the body's mucosal surfaces (e.g., respiratory and digestive tracts). Low IgA levels can indicate IgA deficiency, a condition where the body does not produce enough IgA, leading to an increased risk of infections and other health issues. The IgA Levels/Deficiency Test helps healthcare providers diagnose and monitor IgA-related conditions.
Other Names for the IgA Levels/Deficiency Test:
Immunoglobulin A (IgA) Test
Total IgA Test
Serum IgA Test
IgA Serum Levels Test
IgA Blood Test
IgA Quantitative Test
IgA Antibody Test
IgA Immunodeficiency Test
 
Whether or not your biopsy shows celiac damage may also depend on how long ago the onset of celiac disease began.

You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating.
The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.

https://www.healthline.com/health/at-home-celiac-test#_noHeaderPrefixedContent

Another factor revealed in your test results is that you are IGA deficient. Look at the line: Immunoglobulin A, Qn, Serum         35 (L)     Reference range: 87 - 352
We also call that "total IGA". IGA deficiency results on in artificially low scores in the individual IGA celiac antibody test scores. In other words, the test score for the tTG-IGA would likely have been higher if you were not IGA deficient. From: 
 
IgA Levels/Deficiency Blood Test
This should always be included in any blood panel for celiac disease, but it does not test directly for celiac disease, and is done to determine the accuracy of the other blood tests. People who are IgA deficient may score lower, of have no measurable levels on certain celiac disease blood tests. This test measures the levels of Immunoglobulin A (IgA) in the bloodstream. IgA is an important antibody that plays a significant role in the immune system, particularly in protecting the body's mucosal surfaces (e.g., respiratory and digestive tracts). Low IgA levels can indicate IgA deficiency, a condition where the body does not produce enough IgA, leading to an increased risk of infections and other health issues. The IgA Levels/Deficiency Test helps healthcare providers diagnose and monitor IgA-related conditions.
Other Names for the IgA Levels/Deficiency Test:
Immunoglobulin A (IgA) Test
Total IgA Test
Serum IgA Test
IgA Serum Levels Test
IgA Blood Test
IgA Quantitative Test
IgA Antibody Test
IgA Immunodeficiency Test
 
Whether or not your biopsy shows celiac damage may also depend on how long ago the onset of celiac disease began.

Welcome to the forum, @Morgan Tiernan!
I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis and because dermatitis herpetiformis has such a distinctive appearance with the pustules in the bumps they should recognize what it was. There is just no excuse for this! You do not mention having any GI distress so I'm sure they were discounting the possibility of celiac disease because of that.
Anyway, one thing that might be helpful to you is to look into a low iodine diet. Iodine exacerbates dermatitis herpetiformis. There is also a med called Dapsone which is effective for dermatitis herpetiformis but it needs to be used with caution as it puts stress on the liver. So, if you were taking Dapsone you would need to have your liver enzymes checked regularly.
Not every dermatologist is familiar with the correct way to biopsy dermatitis herpetiformis so I hope it was done correctly in your case. My understanding is that the samples need to be taken next to the bumps and not on the bumps. At any rate, if your biopsy is positive for dermatitis herpetiformis you have your official celiac diagnosis. By the way you spell "coeliac" I'm assuming you live in the U.K. If so, there may be some extra benefits available to you if you have an official diagnosis.
Keep us posted.

Matthew 18:21-35

Matthew 18:21-35

I have concern as well about the long term use of any PPI. I understand it was given to you to address the GERD but PPIs were never intended to be long term solutions. Yet, docs prescribe them like candy and never monitor for the ongoing need. They just leave people on them indefinitely which has long term negative health consequences from raising gut PH such as osteoporosis and other nutrient deficiency related problems. Raising gut PH (lower acidity) inhibits digestion and the assimilation of nutrients. I was on a PPI for years and weaned myself off of it in about a year. It was not easy because you get rebound, typically, that is. I used TUMS as a bridge.

Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!

Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!

Welcome to the forum, @Kwinkle!
Realize first that the B vitamins are water soluble which means excess is excreted in our urine and does not build up in our tissues like fat soluble vitamins do. So, there is little risk of toxicity with large doses of the B's. 
Second, if you start with smaller doses they may not be large enough to be therapeutic and so will not help.
So, my recommendation is to start with high potency levels. But you also need to realize that the B vitamins work in concert with each other. So, it may not be a good idea to just to dose up on one or two of them. It might create imbalance. It would be a better idea IMO to take a high-potency B-complex. Make sure all supplements are gluten free.
If you live near a Costco, Nature Made Super B-Complex with C is a good choice.