Testing next week

[KJ2244]

Hello! I’m new to this group, and this is my first post.  I’m one of those people that thought Celiac was an allergy, despite having a family history. My Grandma was diagnosed as a senior citizen and there are other family members but I have never discussed it with them.  Now that I know more about it, I believe my dad has it but he will never get tested. He doesn’t have much faith in doctors. My genetic test shows I do have one gene and my doctor wants me to be tested because of chronic constipation and reflux as well as elevated liver enzymes.  I hadn’t been eating much gluten in recent years although I was not gluten-free.  I probably had a meal that included gluten about 1 - 2 times a week.  For the last week I have been consuming it daily in preparation for my endoscopy next week and I am miserable.  I feel like I’m about to pop. I have pain in my left side, joint pain, headaches, sciatica, the list goes on.  Could this really be from gluten when I wasn’t gluten-free before this or is there maybe something else going on? Has anyone else experienced this? It’s going to be tough to keep this up for another week.  

 

 

[trents]

Most or all of the symptoms your describe are not uncommon to the celiac experience and gluten related. By the way, elevated liver enzymes was what led to my celiac diagnosis. Within three months of going off gluten those enzymes normalized. Elevated liver enzymes are experienced by about 18% of the pre-diagnosed celiac population but not one of the issues you hear much about since it doesn't have the typical symptom earmarks of pain or discomfort.

Edited March 10, 2021 by trents

[Scott Adams]

Welcome to the forum @KJ2244!

Unfortunately it sounds like you are having classic symptoms, and being on a low gluten diet for so long probably spared you from feeling this badly all the time.

Did your doctor mention anything about a blood test? You should also get this done, however, you normally need to eat gluten daily for at least 6 weeks before a blood test. If you can't manage that, I would ask your doctor to still do a blood test at the end of your gluten challenge, keeping in mind that the results of it may be lower than normal.

[KJ2244]

Thank you for the replies. I kept telling myself that it couldn’t be the gluten because I wasn’t gluten-free before this. Dang. 
My liver enzymes are only slightly elevated but have been that way and increasing a bit more for the last 3 years. 
My doctor did mention the blood test but since I’ve recently passed that magic “50” mile marker and was due for a colonoscopy, he decided to go straight to the endoscopy and do them at the same appointment. I will ask about the blood test. 
Thanks again!

[trents]

Ask the doctor to order a full celiac panel, not just the TTG as outline in this article. This would include the "other" tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The TTG is the most specific for celiac disease but the least sensitive.

[KJ2244]

Thank you! I wouldn’t have known about this! 

[KJ2244]

Well, I survived my endoscopy and colonoscopy today.  I won’t have results for awhile but I was diagnosed with Barrett’s esophagus today.  Another thing that was not on my radar.  Is Barrett’s esophagus related to celiac? Anyone else have experience with this? 

[trents]

Barrett's esophagus occurs more often in people with chronic GERD (Gastro Esophagial Reflux Disease) than in the general population. The constant irritation and inflammation caused by the stomach acid getting past the lower esophagial sphincter (LES) causes cellular changes in the esophagus and that is called Barrett's esophagus. That said, GERD is more common in the celiac population than in the general population. So there probably is some statistical correlation between celiac disease and Barrett's but to say celiac disease causes Barrett's would not be correct.

I don't mean to frighten you but Barrett's sometimes turns into cancer so please get it checked regularly.

[KJ2244]

My GI doctor said we’d being seeing a lot of each other. Waiting for biopsy results and follow up appointment to know just how much. 
At least I got a great nap during the procedure! 
Thanks! 

[trents]

Yes, I've always been amazed how you can have a long hose shoved into your body from either end and come out of it not even realizing anything was done.

[KJ2244]

Thought I should update this with my results. My biopsy for celiac was negative. The Barrett’s esophagus was negative for dysplasia so that is great news. They did a ton of blood work and I was under the understanding that the ones for Celiac were included but they were not done.
From the other blood tests it looks like I do have Hashimoto’s (I also had an ultrasound of my thyroid) and Pernicious anemia so my GI doctor is recommending that I eat gluten-free anyway. He’s not convinced my biopsy for Celiac was accurate.  Anyway, I’ve been eating gluten-free for almost two weeks and not all of my symptoms are gone but I’ve noticed a big difference particularly with bloating. During the 2 weeks before the endoscopy, I was so bloated my ribs hurt. I haven’t had any bloating at all. I’m not willing to go back to eating gluten to do further testing so I’m just going to eat gluten-free and see how it goes. Thank you for your input! 

[Scott Adams]

It’s possible that the diet will help normalize your thyroid issues, if they are caused by gluten sensitivity. I hope the diet works for you, and keep us posted on your progress.

[KJ2244]

Hello again! 
I recently switched doctors to a doctor more knowledgeable about AI issues. When she was reviewing my records she discovered that only 3 biopsies were taken to test for Celiac during my endoscopy. She would like me to do more testing (blood tests) given my Hashimoto’s diagnosis. That would involve eating gluten again. I’m finally starting to feel better after a month+ of eating gluten-free. Is it really that important to have a diagnosis when I already have to be Gluten-free for Hashimoto’s?  I really don’t want to go back to feeling awful. 
Thanks for any help you can offer! 

[Scott Adams]

If your symptoms are improving on a gluten-free diet, and you’re good with staying on the diet without a piece of paper that tells you it’s required, I don’t see a need for the diagnosis, do you? Eating gluten daily for 6 weeks or more could cause you serious issues.

[KJ2244]

That is exactly how I feel about it!  I just thought maybe there was something I was missing that would make a diagnosis important. 

[Scott Adams]

Some people point out that you may forgo possible follow up treatment for celiac disease, but most doctors don't freely offer this--mine have never done so, and I've had to ask for any of the follow up checks to see if my antibody levels went down, etc. I've never been offered a follow up biopsy to see if my gut ever healed, but I'm reasonably sure that it did.

An official diagnosis also could mean higher life insurance premiums and it will be harder to get, and possibly private higher health insurance as well.

[Posterboy]

On 3/10/2021 at 11:24 AM, KJ2244 said:

Thank you for the replies. I kept telling myself that it couldn’t be the gluten because I wasn’t gluten-free before this. Dang. 
My liver enzymes are only slightly elevated but have been that way and increasing a bit more for the last 3 years. 
My doctor did mention the blood test but since I’ve recently passed that magic “50” mile marker and was due for a colonoscopy, he decided to go straight to the endoscopy and do them at the same appointment. I will ask about the blood test. 
Thanks again!

 

2 hours ago, Scott Adams said:

Some people point out that you may forgo possible follow up treatment for celiac disease, but most doctors don't freely offer this--mine have never done so, and I've had to ask for any of the follow up checks to see if my antibody levels went down, etc. I've never been offered a follow up biopsy to see if my gut ever healed, but I'm reasonably sure that it did.

An official diagnosis also could mean higher life insurance premiums and it will be harder to get, and possibly private higher health insurance as well.

 

On 3/17/2021 at 10:01 PM, KJ2244 said:

 Is Barrett’s esophagus related to celiac? Anyone else have experience with this? 

KJ,

This would be better as two reply's....but the last time I replied twice quickly the forum merged my two replies into one....

First I wanted to say Scott has given you good advice.....shortly after I got my "Official" Celiac diagnosis....I was denied my disability insurance "increase" that tracks with your income....

Given no reason "in particular" but was told my "Poor Health" did not qualify me to extend or increase my disability policy....

I had also gotten a "Type II Diabetes" diagnosis around the same time.....but it was/is well controlled without complications so I don't think it was that....

So be careful what you wish for....if you can leave without a "Gold Standard" biopsy proven diagnosis...and you don't need an "official" diagnosis for motivation.....then your health insurance will probably be cheaper.... and they won't have that reason to deny you coverage.

It is a real concern IMO.

This is for your Barrett's esophagus.....that is usually from Bile Reflux.

Here is a nice article on it.

https://www.foxnews.com/health/gerd-or-nerd-new-type-of-heartburn-doesnt-respond-to-drugs

Taking PPIs can actually trigger this condition....it has been my experience MORE Stomach Acid is always better than LESS Than Stomach Acid.

I wrote a Posterboy blog post about how NCGS might just be Low Stomach Acid being misdiagnosed...

Maybe it will help you too read it.

Also the Elevated Liver Enzymes can be from Gastrointestinal Beri Beri.

Here is an article about it...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

Taking the Fat Soluble B-1s with Magnesium Citrate with meals are best!

Benfotiamine has been studied to help the Liver and Heart kinds of Beri Beri.

There is two main kinds of Beri Beri i.e. Dry (Mind/Neuro) aka WE and Wet Beri Beri (Heart and Liver) kind.

That is an oversimplification but it will help you decide what kind of Thiamine Supplement to take!

Here is a nice overview of the different Thiamine Supplements from the Hormones Matter website.

https://www.hormonesmatter.com/navigating-thiamine-supplements/

But taking the Fat Soluble Thiamine's with Magnesium and Meals are imperative if you want them to help you...

I explain it in little more detail here...

It should also be noted being low in Thiamine can Thin your Villi..

Here is the original research about it...and it explains a Lactose allergy as well.

Entitled "Effect of dietary thiamine deficiency on intestinal functions in rats"

If you would like read a nice article about these connections see this article.

I hope this is helpful but it is not medical advice.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

[KJ2244]

Thank you for your responses. There’s some great information here I will definitely read through it. I found out today that one of the reasons my new doctor wanted to do more testing is because I’ve tested deficient in every vitamin, mineral she has tested me for. It can be difficult to get insurance to pay for all the testing without a diagnosis that supports it. But those are great points about insurance costs. I’m plenty motivated by feeling better and don’t want to return to eating gluten even for a few weeks so I may just have to pay for some testing out of pocket. Seems like a better solution. 
Thanks again!