Shouldn’t my doctor be telling me more?

[QLisa]

I’m 33 and was just diagnosed with Celiac disease out of the blue. I was seeing an ENT for some reflux/swallowing issues. She ordered a swallow study and it showed food sticking in my esophagus, but not my throat. She said “that’s not my area” and referred me to a GI. 
 

The GI’s office called and said, you can wait until September for an appointment, or you can schedule an endoscopy ASAP based on your swallow study results. So I said, why wait, let’s do the endoscopy.

So I have never actually had an office visit with the doctor that performed the endoscopy. The endoscopy was just over two weeks ago. Esophagus appeared and biopsied normal, small intestines showed scalloping and villous atrophy and biopsied consisted with Celiac disease.

Keep in mind, I went into the scope thinking I had a problem with my esophagus. Celiac was not on my radar. The only communication I’ve had with the doctor has been by mail. I got my biopsy results in the mail two weeks after the scope. It included an order for bloodwork (which I’ve had drawn but have not received results) and a handout about eating gluten free.

I didn’t get any feedback on my particular case. Just a generic “celiac disease. Eat gluten free.” Shouldn’t he discuss with me my level of damage? What I can expect going forward? Are there not regular check ups or blood tests to check for healing?

Additionally, as this came as such a shock, seemingly ‘out of nowhere,’ my husband is having a hard time taking it seriously/believing the results are accurate. He suggested getting a second opinion and I told him second opinions on biopsies weren’t a thing. Is there something to what he’s saying though? There are multiple causes of damaged villi, does the biopsy ensure that celiac/gluten is really the culprit?  

 

[trents]

45 minutes ago, QLisa said:

I’m 33 and was just diagnosed with Celiac disease out of the blue. I was seeing an ENT for some reflux/swallowing issues. She ordered a swallow study and it showed food sticking in my esophagus, but not my throat. She said “that’s not my area” and referred me to a GI. 
 

The GI’s office called and said, you can wait until September for an appointment, or you can schedule an endoscopy ASAP based on your swallow study results. So I said, why wait, let’s do the endoscopy.

So I have never actually had an office visit with the doctor that performed the endoscopy. The endoscopy was just over two weeks ago. Esophagus appeared and biopsied normal, small intestines showed scalloping and villous atrophy and biopsied consisted with Celiac disease.

Keep in mind, I went into the scope thinking I had a problem with my esophagus. Celiac was not on my radar. The only communication I’ve had with the doctor has been by mail. I got my biopsy results in the mail two weeks after the scope. It included an order for bloodwork (which I’ve had drawn but have not received results) and a handout about eating gluten free.

I didn’t get any feedback on my particular case. Just a generic “celiac disease. Eat gluten free.” Shouldn’t he discuss with me my level of damage? What I can expect going forward? Are there not regular check ups or blood tests to check for healing?

Additionally, as this came as such a shock, seemingly ‘out of nowhere,’ my husband is having a hard time taking it seriously/believing the results are accurate. He suggested getting a second opinion and I told him second opinions on biopsies weren’t a thing. Is there something to what he’s saying though? There are multiple causes of damaged villi, does the biopsy ensure that celiac/gluten is really the culprit?  

 

QLisa, welcome to the forum!

I hope you had not already started trying to eat gluten free before the blood draw as that may invalidate the results. 

Reflux/GERD is common among those with celiac disease.

The gold standard for diagnosing celiac disease is the endoscopy with biopsy of the small intestine lining. Celiac disease damages the lining ("villi") of the small bowel. There are some other diseases (parasitic intestinal infections) that can cause villi blunting as well and some medications, e.g. losartan, NSAIDS, and there is some evidence that in some people the dairy protein casein can blunt villi. But the chances of your villi blunting being caused by other than celiac disease is pretty small.

I find it curious that blood antibody tests for celiac disease was ordered after the endoscopy/biopsy confirmed celiac disease. But perhaps it will serve the purpose in the future of a non invasive marker for gaging healing and the success of your efforts to eat gluten free.

Concerning your husband's recommendation to get a second opinion, frankly, it would be a waste of time and money. The endoscopy/biopsy results are pretty conclusive. If anything, if your blood antibodies are positive, you could look at that as a second opinion.

Your husband's reaction is something you will face over and over with family and friends. Many people not consider gluten-related diseases (i.e., celiac disease and Non Celiac Gluten Sensitivity or NCGS) to be legitimate medical problems and consider "gluten free eating" to be the latest fad diet. There are some heart breaking stories that have been shared on this forum about insensitive treatment of celiac/gluten sensitive members by their family and friends. And this is a great read: 

It will give you an idea of what to expect socially. It's just hard for people to believe that wheat, universally considered the "staff of life" and a whole grain health food, can do you harm.

The other thing you should be aware of is that there is a 44% chance that your first degree relatives (your children, parents, siblings) will have or will develop celiac disease. The latest estimates (and the numbers have risen steadily in the past 20 years) are that 1% to 1.5% of the population have celiac disease and many more than that (like 12%) are gluten sensitive. Most will be in denial and not get diagnosed or misdiagnosed with other medical conditions. Also, the medical community is in general still pretty ignorant about celiac disease and gluten sensitivity. You should be thankful that that you finally got a correct diagnosis, almost by accident. But your experience is not atypical. Stats show that on the average it takes ten years or more for celiacs to finally get a diagnosis.

Edited July 2, 2021 by trents

[QLisa]

5 minutes ago, trents said:

QLisa, welcome to the forum!

I hope you had not already started trying to eat gluten free before the blood draw as that may invalidate the results. 

Reflux/GERD is common among those with celiac disease.

The gold standard for diagnosing celiac disease is the endoscopy with biopsy of the small intestine lining. Celiac disease damages the lining ("villi") of the small bowel. There are some other diseases (parasitic intestinal infections) that can cause villi blunting as well and some medications, e.g. losartan, NSAIDS, and there is some evidence that in some people the dairy protein casein can blunt villi. But the chances of your villi blunting being caused by other than celiac disease is pretty small.

I find it curious that blood antibody tests for celiac disease was ordered after the endoscopy/biopsy confirmed celiac disease. But perhaps it will serve the purpose in the future of a non invasive marker for gaging healing and the success of your efforts to eat gluten free.

Concerning your husband's recommendation to get a second opinion, frankly, it would be a waste of time and money. The endoscopy/biopsy results are pretty conclusive. If anything, if your blood antibodies are positive, you could look at that as a second opinion.

Your husband's reaction is something you will face over and over with family and friends. Many people not consider gluten-related diseases (i.e., celiac disease and Non Celiac Gluten Sensitivity or NCGS) to be legitimate medical problems and consider "gluten free eating" to be the latest fad diet. There are some heart breaking stories that have been shared on this forum about insensitive treatment of celiac/gluten sensitive members by their family and friends. And this is a great read: 

It will give you an idea of what to expect socially. It's just hard for people to believe that wheat, universally considered the "staff of life" and a whole grain health food, can do you harm.

The other thing you should be aware of is that there is a 44% chance that your first degree relatives (your children, parents, siblings) will have or will develop celiac disease. The latest estimates (and the numbers have risen steadily in the past 20 years) are that 1% to 1.5% of the population have celiac disease and many more than that (like 12%) are gluten sensitive. Most will be in denial and not get diagnosed or misdiagnosed with other medical conditions. Also, the medical community is in general still pretty ignorant about celiac disease and gluten sensitivity. You should be thankful that that you finally got a correct diagnosis, almost by accident. But your experience is not atypical. Stats show that on the average it takes ten years or more for celiacs to finally get a diagnosis.

Thanks for your reply. I continued eating gluten in the two weeks waiting for biopsy results, probably overdid it trying to eat a variety of things for “the last time.” I got my blood drawn the next day and immediately following went gluten free. So today is day 3. Not a big change here at home, but I know socially it is going to be very challenging. 

I think I’ll call and request an appointment if they aren’t going to suggest it, because I have a lot of questions. My oldest son has a very rare food-allergic condition (FPIES) so I am well versed in having doctors diagnose and then dump you to deal on your own. I was just hoping for some competent care to guide me through at least this initial phase. 
 

Can celiac somehow be related to food sticking in the esophagus? Everything appeared and biopsied normal. But they saw the food sitting during the study and not budging even with water. It’s an issue that comes and goes, but one it’d be nice to have an explanation for. 

 

[trents]

Your son with FPIES, has he been tested for celiac disease? One of the things to grasp about celiac disease is that it is not an allergy. It is an autoimmune disease. It is IGA mediated, not IGE mediated, just like FPIES.

I'll take a wild stab at the food sticking in the esophagus issue. So here goes.

One of he common health spinoffs of celiac disease and also gluten sensitivity is neurological damage. I'm wondering if your swallowing function has become impaired from neurological damage.

[cb1988]

19 hours ago, QLisa said:

Thanks for your reply. I continued eating gluten in the two weeks waiting for biopsy results, probably overdid it trying to eat a variety of things for “the last time.” I got my blood drawn the next day and immediately following went gluten free. So today is day 3. Not a big change here at home, but I know socially it is going to be very challenging. 

I think I’ll call and request an appointment if they aren’t going to suggest it, because I have a lot of questions. My oldest son has a very rare food-allergic condition (FPIES) so I am well versed in having doctors diagnose and then dump you to deal on your own. I was just hoping for some competent care to guide me through at least this initial phase. 
 

Can celiac somehow be related to food sticking in the esophagus? Everything appeared and biopsied normal. But they saw the food sitting during the study and not budging even with water. It’s an issue that comes and goes, but one it’d be nice to have an explanation for. 

 

Hi! I have a one year old with suspected FPIES. I haven’t been diagnosed with celiac but think I’m at least NCGS. Can you share more about your fpies experience? I’m 3 weeks out from a 3 month wait to get into a knowledgeable allergist to see about diagnosis. 

[QLisa]

10 minutes ago, cb1988 said:

Hi! I have a one year old with suspected FPIES. I haven’t been diagnosed with celiac but think I’m at least NCGS. Can you share more about your fpies experience? I’m 3 weeks out from a 3 month wait to get into a knowledgeable allergist to see about diagnosis. 

Hello! I’m so sorry your likely on the FPIES journey. My son with FPIES is 12 and finding knowledgable doctors 12 years ago was next to impossible. There wasn’t even a diagnostic code yet. 
 

There are two types of FPIES, chronic (which some now diagnose as FPIAP) and acute. My son was a textbook acute case. It started with oat and rice cereal. Two hours after ingestion he’d begin vomitting violently. He ended up having seven acute triggers (oats, rice, sweet potatoes, egg, chicken, green beans, and squash). He did have one reaction (eggs) where he went into shock and was hospitalized for a week. 
 

He outgrew all triggers EXCEPT EGGS around age 3. We retried eggs at age 11 and it was still a fail. 
 

We didn’t even actually get a lot of help from medical professionals, but now they can provide guidance in the case of ER visits, prescriptions for zofran,  in office challenges (for known triggers to see if outgrown), referrals to nutritionists or feeding therapy, etc. I would encourage you to pursue an official diagnosis for those perks, though it’s still going to largely be a home managed condition including food trialing at home. 
 

My second son eats any and everything without issue. 

[QLisa]

19 hours ago, trents said:

Your son with FPIES, has he been tested for celiac disease? One of the things to grasp about celiac disease is that it is not an allergy. It is an autoimmune disease. It is IGA mediated, not IGE mediated, just like FPIES.

I'll take a wild stab at the food sticking in the esophagus issue. So here goes.

One of he common health spinoffs of celiac disease and also gluten sensitivity is neurological damage. I'm wondering if your swallowing function has become impaired from neurological damage.

He hasn’t been tested for celiac as he’s never displayed symptoms and until the last couple of weeks he had no family history. (I am the first diagnosed celiac in my family, including extended out to cousins, aunts/uncles, grandparents). His FPIES was a pretty standard case and wheat was one of the first foods he could have that did not trigger a response.  

[trents]

Well, if wheat didn't trigger a response then that rules out celiac disease or gluten sensitivity for the present. A recent study involving around 400 related people showed a 44% chance that the first degree relatives of those with celiac disease will have or will develop celiac disease. It takes both the genetic potential and some kind of stress trigger (such as a viral illness) to activate the disease. 

[cb1988]

2 hours ago, QLisa said:

Hello! I’m so sorry your likely on the FPIES journey. My son with FPIES is 12 and finding knowledgable doctors 12 years ago was next to impossible. There wasn’t even a diagnostic code yet. 
 

There are two types of FPIES, chronic (which some now diagnose as FPIAP) and acute. My son was a textbook acute case. It started with oat and rice cereal. Two hours after ingestion he’d begin vomitting violently. He ended up having seven acute triggers (oats, rice, sweet potatoes, egg, chicken, green beans, and squash). He did have one reaction (eggs) where he went into shock and was hospitalized for a week. 
 

He outgrew all triggers EXCEPT EGGS around age 3. We retried eggs at age 11 and it was still a fail. 
 

We didn’t even actually get a lot of help from medical professionals, but now they can provide guidance in the case of ER visits, prescriptions for zofran,  in office challenges (for known triggers to see if outgrown), referrals to nutritionists or feeding therapy, etc. I would encourage you to pursue an official diagnosis for those perks, though it’s still going to largely be a home managed condition including food trialing at home. 
 

My second son eats any and everything without issue. 

Thank you for this! It’s really nice to hear from people that are at least some what on the other side of it. For now, the future seems stressful and daunting but from my understanding there’s a good chance it’s not permanent. She’s tried a good amount of foods and so far it’s eggs and soy. It seems to either be getting more common or that people are just recognizing it more, I’ve already come across two people I know that have been through it. I thank you for your response, it’s comforting to know that he’s 12 and doing well. I hope you are able to find answers for yourself and find a great dr to help you! 

[Scott Adams]

For what it's worth, my daughter who is officially gluten sensitive and not a diagnosed celiac (high antibodies but just below the cut off for celiac disease, thus never did a biopsy) had one major symptom: the feeling that food was getting stuck in her esophagus. It bothered her so much that she decided to go gluten-free, and her symptoms went away. I believe, due to our family history (her dad and grandmother have celiac disease), that she also has celiac disease, and if she had continued to eat gluten her antibody levels would have eventually crossed the threshold, and she would end up with villi damage (if she didn't already have it).

[Blue-Sky]

On 7/3/2021 at 7:51 AM, QLisa said:

He hasn’t been tested for celiac as he’s never displayed symptoms and until the last couple of weeks he had no family history. (I am the first diagnosed celiac in my family, including extended out to cousins, aunts/uncles, grandparents). His FPIES was a pretty standard case and wheat was one of the first foods he could have that did not trigger a response.  

If he hasn't been tested for celiac disease he could still be celiac.  Non-classic celiac disease is actually more common than classical celiac disease. Silent celiac disease is also fairly common. If someone is Celiac they have a greater chance of also having one or more food allergy. A gluten free diet in this case would not cure the food allergy. 

[QLisa]

On 7/5/2021 at 4:06 PM, Scott Adams said:

For what it's worth, my daughter who is officially gluten sensitive and not a diagnosed celiac (high antibodies but just below the cut off for celiac disease, thus never did a biopsy) had one major symptom: the feeling that food was getting stuck in her esophagus. It bothered her so much that she decided to go gluten-free, and her symptoms went away. I believe, due to our family history (her dad and grandmother have celiac disease), that she also has celiac disease, and if she had continued to eat gluten her antibody levels would have eventually crossed the threshold, and she would end up with villi damage (if she didn't already have it).

I appreciate you sharing this! Since the scope didn’t show anything abnormal with my esophagus, my team of doctors (primary, ENT, and GI) have basically washed their hands of investigating the swallowing issue further. It’s happening a lot less often than it used to, so maybe it was celiac all along somehow. A mystery I guess I have to be content to live with for now. 

[Distressed]

On 7/2/2021 at 10:10 AM, QLisa said:

I’m 33 and was just diagnosed with Celiac disease out of the blue. I was seeing an ENT for some reflux/swallowing issues. She ordered a swallow study and it showed food sticking in my esophagus, but not my throat. She said “that’s not my area” and referred me to a GI. 
 

The GI’s office called and said, you can wait until September for an appointment, or you can schedule an endoscopy ASAP based on your swallow study results. So I said, why wait, let’s do the endoscopy.

So I have never actually had an office visit with the doctor that performed the endoscopy. The endoscopy was just over two weeks ago. Esophagus appeared and biopsied normal, small intestines showed scalloping and villous atrophy and biopsied consisted with Celiac disease.

Keep in mind, I went into the scope thinking I had a problem with my esophagus. Celiac was not on my radar. The only communication I’ve had with the doctor has been by mail. I got my biopsy results in the mail two weeks after the scope. It included an order for bloodwork (which I’ve had drawn but have not received results) and a handout about eating gluten free.

I didn’t get any feedback on my particular case. Just a generic “celiac disease. Eat gluten free.” Shouldn’t he discuss with me my level of damage? What I can expect going forward? Are there not regular check ups or blood tests to check for healing?

Additionally, as this came as such a shock, seemingly ‘out of nowhere,’ my husband is having a hard time taking it seriously/believing the results are accurate. He suggested getting a second opinion and I told him second opinions on biopsies weren’t a thing. Is there something to what he’s saying though? There are multiple causes of damaged villi, does the biopsy ensure that celiac/gluten is really the culprit?  

 

The reality is that doctors are aggravated by celiac disease.  One said they had a hard time accepting its prevalence.  People do not want to adjust their eating habits. As such ridicule, humor, denial are used as a method to mask their own fears of having to change. My hubby has been good about not bringing gluten into the house since my surgery. Now that he requires a low carb (keto-style) diet for health purposes, he is appreciative of my acceptance of his nutritional needs when meals are prepared.  It all comes down to one issue: having love for one another.  

[Scott Adams]

There are many examples in this forum of doctors who don't even want to share positive celiac disease test results with their patients because they've deemed the diet too difficult for them...hard to believe but this still happens far too often. 

Also, this recent article series by Jean Duane PhD captures some of the social issues surrounding the gluten-free diet. Way too many people can't cope with people who are different in some basic way.

 

[knitty kitty]

On 7/14/2021 at 4:15 PM, QLisa said:

I appreciate you sharing this! Since the scope didn’t show anything abnormal with my esophagus, my team of doctors (primary, ENT, and GI) have basically washed their hands of investigating the swallowing issue further. It’s happening a lot less often than it used to, so maybe it was celiac all along somehow. A mystery I guess I have to be content to live with for now. 

I experienced dysphagia (difficulty swallowing) as a symptom of Thiamine deficiency.  Doctors don't recognize thiamine deficiency outside of alcoholism.  

Severe dysphagia as the presenting symptom of Wernicke-Korsakoff syndrome in a non-alcoholic man

https://pubmed.ncbi.nlm.nih.gov/18379741/

And... 

A difficult diagnosis to swallow

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3588575/

And....

Why Doctors Must Be More Vigilant About Diagnosing and Treating Wernicke’s Encephalopathy

https://www.hopkinsmedicine.org/news/articles/why-doctors-must-be-vigilant-about-wernickes-enchephalopathy

 

Hope this helps. 

[QLisa]

47 minutes ago, knitty kitty said:

I experienced dysphagia (difficulty swallowing) as a symptom of Thiamine deficiency.  Doctors don't recognize thiamine deficiency outside of alcoholism.  

Severe dysphagia as the presenting symptom of Wernicke-Korsakoff syndrome in a non-alcoholic man

https://pubmed.ncbi.nlm.nih.gov/18379741/

And... 

A difficult diagnosis to swallow

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3588575/

And....

Why Doctors Must Be More Vigilant About Diagnosing and Treating Wernicke’s Encephalopathy

https://www.hopkinsmedicine.org/news/articles/why-doctors-must-be-vigilant-about-wernickes-enchephalopathy

 

Hope this helps. 

 

I appreciate you sharing. The GI that diagnosed me with celiac only tested my vitamin D levels (low) and told me to follow up with my primary care doctor for a bone density scan. When I see her I’ll request labs checking for more vitamin/mineral deficiencies. 

[knitty kitty]

Ask for the erythrocyte transketolase test for thiamine deficiency.  It's more accurate than a blood test.

[ButWhatCanIEat]

I am sorry for your shock and awe. I can relate, as I was sent to the GI for a seemingly unrelated complaint (at age 48!) and got a celiac diagnosis. Until I got the endoscopy I still was in denial, but that is pretty much the gold standard of diagnosis.

Yes, they should be telling you more, referring you to a dietician who is trained in ushering you into the gluten-free lifestyle, but not every doctor does this. I'm convinced they should offer therapy to newly diagnosed celiac patients too. I cried for 2 days after getting the news. I was convinced my life was over.

[ButWhatCanIEat]

On 7/15/2021 at 12:28 PM, Distressed said:

The reality is that doctors are aggravated by celiac disease.  One said they had a hard time accepting its prevalence.  People do not want to adjust their eating habits. As such ridicule, humor, denial are used as a method to mask their own fears of having to change. My hubby has been good about not bringing gluten into the house since my surgery. Now that he requires a low carb (keto-style) diet for health purposes, he is appreciative of my acceptance of his nutritional needs when meals are prepared.  It all comes down to one issue: having love for one another.  

I know my spouse loves me but she has a really hard time with the concept that she should not bring gluten containing foods in the house. She is on nutrisystem, which has almost no gluten-free options, and she is convinced eating the foods in her room is enough (while using the same utensils, same microwave, putting them in the sink, preparing foods on the counter and never cleaning up after herself). I just met a hard wall of resistance every time I tried to talk to her about it. I try my best to clean surfaces in the kitchen twice a day and I use a lot of paper plates now.

[trents]

On 7/2/2021 at 10:10 AM, QLisa said:

I didn’t get any feedback on my particular case. Just a generic “celiac disease. Eat gluten free.” Shouldn’t he discuss with me my level of damage? What I can expect going forward? Are there not regular check ups or blood tests to check for healing?

Additionally, as this came as such a shock, seemingly ‘out of nowhere,’ my husband is having a hard time taking it seriously/believing the results are accurate. He suggested getting a second opinion and I told him second opinions on biopsies weren’t a thing. Is there something to what he’s saying though? There are multiple causes of damaged villi, does the biopsy ensure that celiac/gluten is really the culprit?  

 

You should get a follow-up biopsy at about the end of a year from starting the gluten free journey. I think this is the preferred method of followup as opposed to retesting serum antibodies. This would be for the purpose of checking healing progress and consistency in eating gluten free. Keep in mind that it typically takes two years of consistent gluten free eating to get full villi return. Serum antibody testing becomes unreliable when a person has already started the effort of gluten free eating. It would most likely give negatives, even if gluten intake is lowered significantly but not eliminated.

Yes, there are other things that can cause villi blunting. Chronic NSAID use, some tropical parasitic diseases, some blood pressure meds like losartan, and even the dairy protein casein for some people. But these are relatively unlikely causes for villi blunting. If you start eating gluten free and your symptoms improve then you likely have your answer. But the challenge will be eating truly gluten free and not just eating a low gluten diet. There is quite a learning curve involved in that.

Edited July 21, 2021 by trents

[Distressed]

7 hours ago, ButWhatCanIEat said:

I know my spouse loves me but she has a really hard time with the concept that she should not bring gluten containing foods in the house. She is on nutrisystem, which has almost no gluten-free options, and she is convinced eating the foods in her room is enough (while using the same utensils, same microwave, putting them in the sink, preparing foods on the counter and never cleaning up after herself). I just met a hard wall of resistance every time I tried to talk to her about it. I try my best to clean surfaces in the kitchen twice a day and I use a lot of paper plates now.

See: Gluten & Cross Contamination (glutenfreesociety.org).  I visited my sister 2 years ago without any problems.  Last year during my visit, I was glued to the toilet for 3 days.  I was extremely cautious and cooked all the meals.  She does not have a dishwasher so who knows where the gluten originated.  Despite good intentions the plan will likely fail even with due diligence as you mention above.  You will know though over the next 3 months. I'm hoping for the best.

 

[Auldtwa]

I've had IBS all my life.  Then suddenly about 8 years ago I became seriously anemic.  Had an endoscopy that found a not particularly dreadful ulcer which the doctor removed.  On checkback the anemia had gotten worse.  So I had another endoscopy after some bloodwork was positive for celiac, and the biopsy was "inconclusive."  The doctor suggested gluten free anyway.

The anemia cleared up very quickly after I went gluten free.  The IBS stayed same old, same old.  But what I have discovered is that now if I eat anything with gluten in it, I become violently ill.  One night in a hospital over it.  Another required an ambulance ride to the ER as I passed out.  I am also diabetic and the vomiting made my blood sugar drop to abysmal levels. 

I can deal with small trace gluten, of the sort where French Fries may be made in oil used to fry things with gluten, and I don't have to worry about things without gluten containing ingredients.

An interesting take on doctors.  The first time I accidentally ate a gluten containing muffin--at the hospital--and I passed out, the doctors wouldn't listen to me about the gluten connection.  They admitted me, convinced it was a heart problem, and I ended up with a complete cardiac checkup paid for by my insurance which would have cost a fortune if I'd just gone in and asked for one with no symptoms.  The time I had to go to the ER,--about 5 years later,  I told the doctor the same thing (accidental eating of mislabeled imitation crab) and the doctor said "yep, probably it" and got my blood sugar and vomiting stabilized and sent me home.  I don't know whether this was a growth of awareness by the medical profession or just the beliefs of different doctors. 

What my current doctor calls it is "anomalous" celiac disease.  I expect that as with so many disorders nowadays, celiac disease is a spectrum, not an all or nothing thing.  And it can present in many ways--in my case malabsorption, not gut issues. Gluten-free has done nothing for those. 

[trents]

"I can deal with small trace gluten, of the sort where French Fries may be made in oil used to fry things with gluten, and I don't have to worry about things without gluten containing ingredients."

Why do you say this? Because you don't get an upset tummy? Low levels of gluten exposure may not produce noticeable symptoms but can still keep small bowel inflammation smoldering, even though imperceptibly. Honestly, you'd better take a look at that approach to avoiding gluten exposure. I'm not so sure your "spectrum" idea of celiac disease will serve you well over time or is even a valid construct. It would be better to say that for some celiacs, minor exposure to gluten produces dramatic symptoms while for others it may not seem to have an effect symptomatically.

 

Edited July 28, 2021 by trents

[Auldtwa]

1 hour ago, trents said:

Why do you say this? Because you don't get an upset tummy?

no.  I never had an upset tummy. Or rather, because my gut issues have nothing to do with gluten.   I say that because I have blood tests every quarter and I am absorbing nutrients fine.  And because my doctor told me that in light of that, I can handle trace.  

The very point I was making is that not everyone has to be overwhelmingly worried about trace gluten.  Get your blood tests, check your symptoms, listen to your doctor. Some people do indeed have to be very, very careful.  Some don't.  

[Distressed]

2 hours ago, Auldtwa said:

I've had IBS all my life.  Then suddenly about 8 years ago I became seriously anemic.  Had an endoscopy that found a not particularly dreadful ulcer which the doctor removed.  On checkback the anemia had gotten worse.  So I had another endoscopy after some bloodwork was positive for celiac, and the biopsy was "inconclusive."  The doctor suggested gluten free anyway.

The anemia cleared up very quickly after I went gluten free.  The IBS stayed same old, same old.  But what I have discovered is that now if I eat anything with gluten in it, I become violently ill.  One night in a hospital over it.  Another required an ambulance ride to the ER as I passed out.  I am also diabetic and the vomiting made my blood sugar drop to abysmal levels. 

I can deal with small trace gluten, of the sort where French Fries may be made in oil used to fry things with gluten, and I don't have to worry about things without gluten containing ingredients.

An interesting take on doctors.  The first time I accidentally ate a gluten containing muffin--at the hospital--and I passed out, the doctors wouldn't listen to me about the gluten connection.  They admitted me, convinced it was a heart problem, and I ended up with a complete cardiac checkup paid for by my insurance which would have cost a fortune if I'd just gone in and asked for one with no symptoms.  The time I had to go to the ER,--about 5 years later,  I told the doctor the same thing (accidental eating of mislabeled imitation crab) and the doctor said "yep, probably it" and got my blood sugar and vomiting stabilized and sent me home.  I don't know whether this was a growth of awareness by the medical profession or just the beliefs of different doctors. 

What my current doctor calls it is "anomalous" celiac disease.  I expect that as with so many disorders nowadays, celiac disease is a spectrum, not an all or nothing thing.  And it can present in many ways--in my case malabsorption, not gut issues. Gluten-free has done nothing for those. 

Malabsorption is typically due to ineffective enzymatic digestion or too fast a passage of foods through the intestine.  Watch your blood calcium levels.  Prolonged low calcium caused a parathyroid adenoma to develop.  In 2009 my vitamins and supplements were full of wheat so the condition only worsened until surgery became necessary.