plumbago

Boar's Head is good when I occasionally buy it. But right now - Sept 2024 - I would be extra careful since they found listeria in their meat plants. Check to see if the packages in your area are affected.

There were a lot of things left out, necessarily, of a one hour discussion. I bet he'd have addressed it had one of their participants asked. It was still a worthwhile discussion.

Plumbago

What I really liked about this video - and thank you so much for posting it - is that he/they talked about what happens to someone vis a vis their celiac disease who is on a gluten-free diet, also active vs inactive celiac disease, and potential celiac disease. These are things that I've been very much wanting to discuss forever.

I have many other questions - but when they talked about other biomarkers, I thought of lipase. Scary pancreatic enzyme if high. One time, I ordered this test for myself and lo and behold, it came back high. I panicked. So I messaged the GI, who told me not to order my own tests (!) in addition to some other things, and so a few years passed. Then I was having some GI issues recently potentially related to a hiatal hernia, potentially related to taking NAC (which I've since stopped), so I went in to see him again. I mentioned the lipase test I ordered on myself a couple of years ago. He looked it up on some doctor site or other that no doubt we all have access to, and one result came back: celiac disease. But that begs the question: controlled celiac disease or uncontrolled? (Anyway, for those interested, he ordered an abd ultrasound, which came back fine.) Understanding the difference between controlled celiac and uncontrolled is something I never cease being very interested in.

I also liked how in the video, Dr Han talked about autoimmunity in general. It's so sad that celiac disease and autoimmunity are not investigated vigorously, especially among Medicaid and Medicare patients. With Medicaid, if someone may have Celiac, forget it. It's almost like it doesn't exist for them.

That is the goal of a gluten-free diet, @SunshineFace.

24 minutes ago, SunshineFace said:

o be indistinguishable from a non-Celiac during an EGD?

But there is another possibility that you did not list, which is that no damage has occurred yet, and it may be a matter of time. However, if in your scenario, the EGD you reference occurred in someone previously diagnosed with celiac disease who had been eating gluten-free for some time, then, yes it likely does mean that healing has taken place.

I was drafting a reply when trents' reply came in, and I concur with everything he says. I was going to say, @jayjays that, based on what you wrote, it seems that the sequence of testing events was not correct. You need to still be eating gluten even for the blood tests.

If your goal is to find out if you have Celiac, then that is what you need to do. Myself, I like knowing a diagnosis as precisely as possible. If on the other hand, you just want the misery to end in the short and medium-term, then it seems you know what to do. But after that, should any symptom return, you might not have as good an idea of what's going on as you would if you had ruled in or ruled out Celiac.

Hi @KsBlonde,

Honestly, I've never even thought about gluten in IV medications (if your concern is indeed that). I seriously doubt is something to be concerned about. I am a nurse who regularly receives vaccines and occasionally IV anesthesia - ie, recently for an EGD/colo. I didn't even think to ask about it!

And not that you asked, but I'm not that concerned either about oral meds - https://www.fda.gov/drugs/buying-using-medicine-safely/medications-and-gluten

But, FWIW, the site below says Prolia has no gluten. Seems it's from New Zealand.

https://medsafe.govt.nz/consumers/cmi/p/prolia.pdf

@Boolka, Nothing attached, btw.

Thanks Gail! It's great to know about this, but it will be important to verify that they are effective and accurate, so please do check back in with any updated info you have.

I'm not surprised about the GI staff. There's a lot of money in our colons, and they need to be scoped to get it out. IOW, I don't think there's much real curiosity about the conditions they are treating. Mostly they are very concerned about not killing us and billing.

That wouldn't sit right with me either. I'm wondering if you can get a second opinion? Meaning - I guess - you'd need to call the doctor's office very quickly to tell them not to dispose of the specimens (they would have to call the pathologist, I'd guess) and to have them read by another pathologist. I'm just tossing that out as a possible idea, I don't really know if it would fly or not. But we do add-on blood tests after the blood's been collected all the time, so it may be worth it to ask if the specimens have still been preserved. Otherwise, in addition to what Scott said, it's possible that the biopsies were indeed negative which may just mean no damage yet. That's good. But that does not mean he doesn't have celiac disease. To be told that is kind of careless, if you ask me.

37 minutes ago, nico86 said:

This site is for people to share there experiences. Not to be debated on their personal experience.

I hear your frustration, but just so you know, Scott Adams is actually one of the founders of this site and is instrumental to say the least in its continuation. I appreciate your giving us a heads up on the food in question, but I also really appreciated what Scott had to say, as I did not really know that.

Plumbago

9 hours ago, nico86 said:

I don't know what it is in the barilla pasta as it says it's made in a gluten free facility to avoid contamination

Did you look on the ingredients list? Maybe there's something there that you react to besides gluten.

3 minutes ago, Ginger38 said:

This one I have always liked as wel. My complaint with all gluten free breads aside from taste, texture and cost , is the once opened you have like 5 days to use it.

This is not my experience at all. I refrigerate or freeze all my gluten free breads. Is that what you are doing?

Also, yes a diet full of processed gluten free foods (especially ultra processed) is not good for anyone. That's why it's best to emphasize whole vegetables, fruits, and meats, and limit breads, crackers, chips, etc. There's a gluten free bakery in my neighborhood. Their breads are terribly unhealthy! I do think oftentimes sugar and salt are added to make up for or disguise the different "mouth feel" of gluten-free options.

3 hours ago, mbrookes said:

As soon as it hit my mouth it turned to glue.

i thought i was the only one who noticed this!

24 minutes ago, Gingle said:

I just thought that maybe some people out there knew of gluten-free blood pressure medications.

Of course.

According to a previous post on this same topic:

You can search for your medication at this site, and see the ingredients section:

https://dailymed.nlm.nih.gov/dailymed/

Part of what I do for my job is dispense medications. The medications patients receive may often have different manufacturers (for the same medication), so it may be worthwhile to call the manufacturer, as well as looking up the ingredients on the above-referenced web site.

Sorry to hear that. Sounds like you are having a bad reaction to this medication and need to return to your primary care doctor and get a recommendation from him or her  (not us...:)) Typically, doctors and other practitioners use an algorithm to determine an appropriate therapy for bringing BP back under control and maintaining it. Amlodipine is a commonly prescribed calcium channel blocker that is often started on people with new onset hypertension. There may be others in this class which better suit you, but again, please do check with your doctor.

Here's an example of such an algorithm (not saying this is what any one doc is using): https://capitalhealth.com/sites/default/files/uploaded-documents/Management of High Blood Pressure in Adults.pdf

what is your a1c?

@KaysMomma

Anecdotally, I have a friend who used to black out after eating and the doctor did diagnose vasovagal as well. How does your daughter do at blood draws? Does she pass out then?

Ok, so in your first post, you say you've gone off gluten. But in your most recent post, you say you are awaiting blood test results. If the blood was drawn after you stopped eating gluten, it will not be possible to get a good sense of if you have celiac disease or not. You need to be eating gluten for a certain amount of time before you get blood tests. Colonoscopy is not used to look for evidence of the villous atrophy of celiac disease; endoscopy plus biopsy is.

Personally, I like working with neurologists, among the last of the specialists that actually touch a patient. He/she was smart to point you in this direction.

Your ejection fraction and all that are good, I'm assuming? (Not sure if you ever did an echo or not) No HF?

I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should!

Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know).

Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate.

Three, where was the CT angiogram (of what)?

I could go on and on, but thought I'd start there.

Could it be something (some additive or other) they added to the rice flour to make it easier to work with or cook?

@gurgi I would look at the ingredients and go through that list to see if an allergic reaction is possible.

Regarding m and s soft rolls: I did a search on the ingredients of the gluten free version. It has added B vitamins (b2, b5, and b6). I also see that niacin (b3) was added. Sometimes when people take b3 or, really, too much of it, they get a flush.

Again, go through the ingredients, try to figure out what constitutes that powder on the tops of the breads, and see if it could be causing a reaction.

Yes, that's probably best. (Honestly, that is an extraordinarily high number, I've never seen anything like that. I repeated my blood tests (not taken while pregnant BTW); before giving up cake, pizza, and beer, I wanted to know for sure! You don't wanna mess around with anything while pregnant. Congratulations and best of luck!

If you tested positive for celiac on labwork, I would definitely give up gluten.

The supplements should work with time on a gluten free diet.

I would be concerned about that sodium level. From the other results you posted, the trend seems to be downward. Please do follow up about that. It's not normal to walk around constantly with a sodium of 130.

As for diagnosis, you could go back on a full gluten containing diet and blood test again.

You could supplement the biopsy with a genetic test (expensive). A positive genetic test, combined with the biopsy, while not a slam dunk, does point to celiac disease.

BTW, do you take a lot of NSAIDs?

Just to understand the timeline here. You say you cut out the wheat, dairy, and high FODMAP foods for two weeks, but you "just" got your lab results back? So you were not eating the aforementioned foods at the time of the blood draw? It's confusing because you also say that after the negative tests you stopped eating those foods. Let's first clarify the timeline here - what were you eating two weeks before the blood tests?