Update- Saw Gastro Doc Today

[Ginger38]

First I wanted to say I went on my trip out of town and was extremely proud of myself - I researched my restaurants and chose wisely and avoided gluten (as far as I know) for the entire trip. It was anything but easy watching everyone eat fried apple pies and cinnamon donuts but I did it!! And I only had to take 1 Imodium pill on the entire trip… I had been living on Imodium most days for years.

Also I finally saw the gastro doc today, after my confusing wild ride over the last 6 years or so.  I really liked him and for the most part I feel like it went really well. He said I had all the classic symptoms of celiac disease and based on that and 2 positive TTG-IGA antibody tests as well as the improvement I see when removing gluten he was positive I had celiac disease and was treating me as such and I should live the same way. 

He does however want me to go back on gluten and have the biopsy. I explained to him that money is an issue and bottom line is I don’t want to go back to consuming gluten everyday for 6-8 weeks and damaging myself and making my self sick just to have the biopsy done. He thinks I can just lick a cracker and try that. I don’t necessarily agree with that. 

I don’t understand why this biopsy is necessary… he said celiacs need dexa scans and additional blood work, but if he’s treating me as a celiac and I am to live as such, why do I need to essentially poison myself? Is this an insurance issue thing? Can I not get testing without the biopsy? Are these other tests so necessary that I need to poison myself for a biopsy?? 

He told me to avoid gluten 100% and be really careful and to live as a celiac. He said I need to take a multivitamin everyday and to call when I decide to do the EGD with biopsy. I just don’t see the point in making myself that sick to have this biopsy especially since he essentially diagnosed me with celiac. It seems crazy to me ….. he did say he didn’t feel I was suffering from malnourishment and he felt I could wait on the biopsy but I need to have it done at the same time.. thoughts?? 

[RMJ]

Some doctors just will not give an official celiac diagnosis without the endoscopy. Luckily, you can treat yourself with a gluten free diet without it! Due to reasons unrelated to celiac disease, I could not get an endoscopy right away. My official diagnosis was “abnormal celiac antibody panel.”  As time went on my gastroenterologist considered me to be one of her celiac patients. One of my antibody levels was still a bit high after four years and I got an endoscopy, without a gluten challenge, and still had some damage.

[knitty kitty]

Get a genetic test.

You can't have Celiac Disease without having the genes.  Genes don't change and you don't have to eat gluten.  

The most common Celiac genes are DQ 2 and DQ 8.  There are others that occur less frequently. 

I've often wondered what happened to that part of the Hippocratic oath that says "first do no harm."

[Ginger38]

9 hours ago, RMJ said:

Some doctors just will not give an official celiac diagnosis without the endoscopy. Luckily, you can treat yourself with a gluten free diet without it! Due to reasons unrelated to celiac disease, I could not get an endoscopy right away. My official diagnosis was “abnormal celiac antibody panel.”  As time went on my gastroenterologist considered me to be one of her celiac patients. One of my antibody levels was still a bit high after four years and I got an endoscopy, without a gluten challenge, and still had some damage.

Yes I am hoping he won’t push the endoscopy…I mean he said he was sure I had celiac and was treating me as such and for me to live that way. My hope is he will continue to see me even if I don’t opt for the gluten challenge and endoscopy. There needs to be better testing options 

[Ginger38]

8 hours ago, knitty kitty said:

Get a genetic test.

You can't have Celiac Disease without having the genes.  Genes don't change and you don't have to eat gluten.  

The most common Celiac genes are DQ 2 and DQ 8.  There are others that occur less frequently. 

I've often wondered what happened to that part of the Hippocratic oath that says "first do no harm."

He mentioned genetic testing but after the endoscopy if it was negative. I just don’t get why they can’t do the genetic testing as opposed to me making myself sick and getting a biopsy. 
I think he mentioned a different type of genetic test HLA or something like that 

[knitty kitty]

HLA is a type of genetic test that will identify Celiac genes as well. 

Doctors are clueless about how badly we react to gluten.  "Lick a cracker" ???? !!!!!!

Find another doctor who will do the genetic test.  (Or threaten your current doctor you will change doctors if he doesn't do a genetic test.  A written request to the doctor and the overseeing medical director may help nudge your doctor into doing the test.) 

 

[ravenwoodglass]

Since you had positive celiac panel results you could ask the doctor to retest your antibodies in a few months and if symptoms have resolved and antibodies are down that should  be enough for a diagnosis. As far as gene testing goes what will you do on the odd chance you carry a celiac gene that wasn't tested for? Would you go back to eating gluten?

[knitty kitty]

Along those lines that @ravenwoodglass mentioned,  getting a baseline endoscopy now without the gluten challenge and another in the future for comparison might be an option.

 

[Ginger38]

21 hours ago, ravenwoodglass said:

Since you had positive celiac panel results you could ask the doctor to retest your antibodies in a few months and if symptoms have resolved and antibodies are down that should  be enough for a diagnosis. As far as gene testing goes what will you do on the odd chance you carry a celiac gene that wasn't tested for? Would you go back to eating gluten?

I didn’t realize that could happen … maybe that’s why he doesn’t do the genetic testing unless he feels it’s necessary after a negative biopsy. 

I see him back in a year, and he will be doing bloodwork then. 
 

[Ginger38]

On 7/26/2022 at 11:06 AM, knitty kitty said:

HLA is a type of genetic test that will identify Celiac genes as well. 

Doctors are clueless about how badly we react to gluten.  "Lick a cracker" ???? !!!!!!

Find another doctor who will do the genetic test.  (Or threaten your current doctor you will change doctors if he doesn't do a genetic test.  A written request to the doctor and the overseeing medical director may help nudge your doctor into doing the test.) 

 

I sent a message about the test and he said he would order the HLA genetic testing but I would need the biopsy to confirm 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️

[Ginger38]

On 7/25/2022 at 10:29 PM, knitty kitty said:

Get a genetic test.

You can't have Celiac Disease without having the genes.  Genes don't change and you don't have to eat gluten.  

The most common Celiac genes are DQ 2 and DQ 8.  There are others that occur less frequently. 

I've often wondered what happened to that part of the Hippocratic oath that says "first do no harm."

He ordered the genetic tests - it said HLA, DQ 2 and DQ 8.. I went and got it done today. I’m sure it takes a while to come back. So what does it mean if these come back positive or negative? 

 

[knitty kitty]

Sounds like that test may only be looking for the two most common Celiac genes. @ravenwoodglasshas an interesting set of Celiac genes.  

If you have the genes for Celiac and have health improvements on the gluten free diet, you can assume you have Celiac Disease. 

Simply having the genes doesn't mean the genes have been activated.  A triggering event such as an infection, or a physical or emotional trauma or stress is needed to activate the gene.  Once activated, a gluten free diet is mandatory.  

[Ginger38]

On 7/26/2022 at 3:01 PM, ravenwoodglass said:

Since you had positive celiac panel results you could ask the doctor to retest your antibodies in a few months and if symptoms have resolved and antibodies are down that should  be enough for a diagnosis. As far as gene testing goes what will you do on the odd chance you carry a celiac gene that wasn't tested for? Would you go back to eating gluten?

So did you have to have the endoscopy to confirm your diagnosis?

I am not planning on eating gluten again. The only way would be if I decided to have the biopsy, but I really don’t want to go through that if at all possible.

also I saw you had a host of misdiagnoses prior to the celiac diagnosis. That’s makes me wonder about myself. 
 I was so sick for a long time and no one could figure out what was wrong with me one, I was sent to many different doctors with no luck. I have had prediabetes for years  as well 

 

15 minutes ago, knitty kitty said:

Sounds like that test may only be looking for the two most common Celiac genes. @ravenwoodglasshas an interesting set of Celiac genes.  

If you have the genes for Celiac and have health improvements on the gluten free diet, you can assume you have Celiac Disease. 

Simply having the genes doesn't mean the genes have been activated.  A triggering event such as an infection, or a physical or emotional trauma or stress is needed to activate the gene.  Once activated, a gluten free diet is mandatory.  

I most definitely improve on the gluten free diet, that’s why I don’t want to go back on it just to have the endoscopy 

[Ginger38]

1 minute ago, Ginger38 said:

So did you have to have the endoscopy to confirm your diagnosis?

I am not planning on eating gluten again. The only way would be if I decided to have the biopsy, but I really don’t want to go through that if at all possible.

also I saw you had a host of misdiagnoses prior to the celiac diagnosis. That’s makes me wonder about myself. 
 I was so sick for a long time and no one could figure out what was wrong with me one, I was sent to many different doctors with no luck. I have had prediabetes for years  as well 

 

I most definitely improve on the gluten free diet, that’s why I don’t want to go back on it just to have the endoscopy 

And also I was in a long term abusive marriage and during that time period is when I started having  issues

[knitty kitty]

@Ginger38,

I was ill for a long time, too.  Doctors don't recognize Celiac Disease very well.  They are stuck on seeing the damage in the small intestine to confirm active Celiac Disease.  Unfortunately, not all the reasons are known why, but the damage varies, so some people are not diagnosed.  

I disagree with having to do a gluten challenge.  What happened to the Hippocratic oath that says "first do no harm"?  I reacted to gluten so badly and got so ill, I couldn't complete it.  

BUT, having a endoscopy without the gluten challenge would give the doctors an idea of the damage and see if there is anything else going on.  It can be used as a baseline with which to compare future endoscopies, also without a prior gluten challenge, to examine and track healing.

Also, I hope you find this article interesting.  I was prediabetic and went on to develop Type Two Diabetes.  Turns out Thiamine deficiency is prevalent in diabetics.  

Thiamine is needed to turn carbohydrates, fats and proteins into energy for the body.  If eating a diet high in carbohydrates (processed cakes, cookies, pasta, sugary candy, etc.), thiamine can become depleted.  

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And thiamine deficiency can result in gastrointestinal beriberi which has symptoms similar to Celiac Disease.  

The best test for Thiamine deficiency or insufficiency is to take 500 mg of Thiamine Hydrochloride and see if there's improvement in health.  The World Health Organization's field test for Thiamine deficiency is to see if you can rise from a squat.  (I squatted in the grocery store and could not get up again.)

Thiamine deficiency can happen whether you have Celiac Disease or not.  If you eat a diet high in carbohydrates, you can develop "high calorie malnutrition".  

Malnutrition happens in Celiac Disease because we can't absorb enough vitamins and minerals due to damage to the small intestine or diarrhea or constipation.  Supplementing with vitamins and minerals can help us replenish the essential nutrients and heal faster.  

Keep us posted on your test results!  I'm waiting on pins and needles.😸

[Ginger38]

On 7/28/2022 at 8:47 PM, knitty kitty said:

@Ginger38,

I was ill for a long time, too.  Doctors don't recognize Celiac Disease very well.  They are stuck on seeing the damage in the small intestine to confirm active Celiac Disease.  Unfortunately, not all the reasons are known why, but the damage varies, so some people are not diagnosed.  

I disagree with having to do a gluten challenge.  What happened to the Hippocratic oath that says "first do no harm"?  I reacted to gluten so badly and got so ill, I couldn't complete it.  

BUT, having a endoscopy without the gluten challenge would give the doctors an idea of the damage and see if there is anything else going on.  It can be used as a baseline with which to compare future endoscopies, also without a prior gluten challenge, to examine and track healing.

Also, I hope you find this article interesting.  I was prediabetic and went on to develop Type Two Diabetes.  Turns out Thiamine deficiency is prevalent in diabetics.  

Thiamine is needed to turn carbohydrates, fats and proteins into energy for the body.  If eating a diet high in carbohydrates (processed cakes, cookies, pasta, sugary candy, etc.), thiamine can become depleted.  

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And thiamine deficiency can result in gastrointestinal beriberi which has symptoms similar to Celiac Disease.  

The best test for Thiamine deficiency or insufficiency is to take 500 mg of Thiamine Hydrochloride and see if there's improvement in health.  The World Health Organization's field test for Thiamine deficiency is to see if you can rise from a squat.  (I squatted in the grocery store and could not get up again.)

Thiamine deficiency can happen whether you have Celiac Disease or not.  If you eat a diet high in carbohydrates, you can develop "high calorie malnutrition".  

Malnutrition happens in Celiac Disease because we can't absorb enough vitamins and minerals due to damage to the small intestine or diarrhea or constipation.  Supplementing with vitamins and minerals can help us replenish the essential nutrients and heal faster.  

Keep us posted on your test results!  I'm waiting on pins and needles.😸

So are the genes he tested for the only gene tests needed? So if these come back negative I can’t have celiac disease? Or are there other genes? 

[knitty kitty]

Do you have the results?

[Ginger38]

2 minutes ago, knitty kitty said:

Do you have the results?

The office called a few minutes ago and left a message saying the results were negative …I’m so very confused and discouraged 

[knitty kitty]

As I understand, some genetic tests search only for the most common Celiac genes HLA DQ 2 and 8.  There are other Celiac genes, though less common.  A different genetic testing may uncover other genes for Celiac Disease.  

 

It may be a good idea to get a copy of the test results.

[Ginger38]

21 minutes ago, knitty kitty said:

As I understand, some genetic tests search only for the most common Celiac genes HLA DQ 2 and 8.  There are other Celiac genes, though less common.  A different genetic testing may uncover other genes for Celiac Disease.  

 

It may be a good idea to get a copy of the test results.

All he ordered to test for was HLA DQ 2 and 8. 

I have every symptom of celiac disease including the rash that drastically improves when not eating  gluten. The doctor was positive I have celiac. But of course wanted to do the gluten challenge and endoscopy…. But I’m already off gluten 

This is very discouraging to me…I have had positive ttg-IGA antibodies twice  and like I said I have I’m convinced I have celiac. 

I don’t mean to share TMI but I had cross contamination recently and noticed a huge change in my stools ..I just don’t see how I can’t have celiac disease 
 

[knitty kitty]

Since you have had positive antibody tests and symptoms, it may be wise to have further genetic testing done to look for other Celiac variants.  

Are you including dairy in your diet?  Any medications?  

 

[busyGF]

Hi Ginger38, I totally agree with you, I didn't want to go back on gluten for 6-8 weeks for further testing and biopsy either and that was many years ago.  I told him, I can't possibly start eating it again because I had a job to keep, family to support, etc.  I was so thick in brain fog and in an out of the bathroom there is no way I could function for 6-8 weeks like that so I decided to not get any further testing and just become gluten free.  I would definitely like to get the genetic testing for sure as well but I have been living gluten free for 14 years now and it doesn't matter to me what my diagnosis is, I just know I feel much better without eating it and I know it is helping my body by not eating it.