plumbago

@Bronwyn W Working with your medical provider, you could do a complete blood count test. If you were bleeding say from an ulcer in the stomach (and let's hope not), your red blood cells could be low and your hemoglobin low as well. Your stools may show up as the proverbial "dark and tarry," indicative of a bleeding site further away from the anus. Basically, you may be anemic. Your heart may be beating extra fast as a way to compensate for the decreased number of blood cells, your oxygen saturation may be lower than normal on a pulse oximeter, and so on. But talk to your doctor.

@Joe R

Thanks for clarifying! That's what I've heard, too, about Italy, but I've never been, sad face. Almost no one on these boards would recommend the approach of your GI doc, and would instead stick with yours. (Maybe if a "glutening" causes so many discomforts and inconveniences that it just overwhelms your life, and you have nothing else to do...maybe.) But, generally in the clinical setting, coming off prednisone requires a taper, as suddenly quitting can cause problems. Anyway, good for you!

@Joe R are you saying that while traveling in Italy as a person with Celiac disease, you are eating gluten-containing foods and taking prednisone to dampen down the flares?

Plumbago

Decir la verdad, no, yo no me doy cuenta de unas complicaciones que puedan resultar de una incidente aislado de comer gluten cuando una este embarazada. Pero si, hay complicaciones de comer gluten regularmente en una mujer embarazada que tiene celiac. Bastante. Nuestro consejo sera NO LO HAGA! En mi opinion – y yo no soy una medica – nada le va a pasar despues de una incidente, sobre todo si ella no esta comiendo gluten regularmente.

Buenos dias de los EEUU!

Denos unos minutos para hacer una traduccion y un poco de research y luego estaremos en contacto.

Plumbago

The endoscopy you just had done - did it include biopsies? Or were the findings you cite what was observed by the person doing the scope? From the sounds of it, it seems like celiac is a likely possibility. Might as well get serology done.

18 minutes ago, Lizy487 said:

Prominent small capillary-like blood vessels seen in the lamina propria.

Which part of the GI tract was this? Small intestine? Something else?

Plumbago

Hello and welcome,

Could you please publish the reference ranges for each test, including tTG-IgA and the endomysial antibodies? When your daughter had her endoscopy, was she eating gluten?

I agree with your position, I would not want to subject her to another endoscopy and biopsy. It sounds like your doctor is saying that since her tiredness is not new that there's no real health status change. Personally, I don't like that assessment, and I would question it. From the bits you have posted, it does look like she has Celiac, but I would want to see a more comprehensive panel. It's good you've continued doing the blood tests, and are in general staying on top of it.

(Are there others in either your family or the child's father's family that have had Celiac?)

People without Celiac do not test positive, regardless of the level. Other moderators on this board may have more up to date information than I do, but I think that's still true.

Plumbago

Hello @VioletM

Has your boyfriend circled back to his doctor to work with him or her on managing the levels of valproic acid / Depakote (as we call it in the US)? This is a medication that has hand tremor as a side effect, in addition to other effects, including neurological, and it requires regular blood level monitoring to make sure he is in the therapeutic range. Otherwise, if you are looking to test for celiac, there are numerous resources on this site regarding which tests to have ordered. It may be worth it to look into this.

Please stay in touch.

Plumbago

@LookingForAnswers101 If you can tell by now, has cutting out gluten helped?

Ok, thanks. I'm so glad to hear you are in the hands of a dermatologist. I hope he/she has given you 1) a diagnosis; and 2) a plan of care with a couple of options so that you have buy-in and comfort with it. I have some ideas, but not having seen the abscesses or you in person, it doesn't really make sense for me to kind of ... speculate further. But your question was regarding gluten, and you've gotten a couple of other follow up questions and answers that are good, including the idea to keep a food diary. Let us know if we can help further or answer any other questions. I'm sorry you're going through this, it sounds very painful.

Hi there,

Can you describe them a little more? Do they ooze? Do they itch? Do they spread like a rash or appear like a "boil?" Has a doctor / dermatologist looked at them? Are they big? Do they seem like they could get infected if not careful? Do they disappear? (You say you get them "2/3" months, assuming you meant "2 to 3" - so have the ones that came 2-3 months beforehand disappeared?) Have you noticed what triggers them?

Etc.

Welcome!

A relative has opened another door for me on this issue -- the possibility of menopause raising HDL. Most studies suggest that menopause decreases HDL-C, however, one study found that often it's increased.

"Surprisingly, HDL cholesterol was higher (p < 0.001) in postmenopausal women by 11%. Further, the number of women who had low HDL cholesterol was higher in pre vs. postmenopausal women. The range of ages were 26–49 years for pre-menopausal and 51–74 years for postmenopausal women.

"This interesting finding has also been observed by other investigators. It is possible that the observed increase in HDL-C in postmenopausal women could be due to a protective mechanism to counterbalance the deleterious effects of biomarkers associated with menopause. However, further studies are needed to confirm this theory.

And to the point raised earlier about functionality:

"...some patients with elevated HDL-C concentrations could remain at risk for coronary events if HDL is not functional and some authors have suggested that this could be the case for menopausal women."

Postmenopausal Women Have Higher HDL and Decreased Incidence of Low HDL than Premenopausal Women with Metabolic Syndrome.

By no means to I think this is definitive, rather food for thought.

I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it.

All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now:

The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess.

Then again, it could be something else. ¯\_(ツ)_/¯

In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities.

@trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.

The last time my vitamin D was very low, according to a lab test, was before I was diagnosed with celiac disease. I've been supplementing ever since, and now the numbers on the lab tests are within their normal ranges, oftentimes way above. I've also been supplementing with methylcobalamin (B12) since I was low before diagnosis in 2010, and now I'm fine. I'm surprised I ever requested a folate level, but I did, in 2019. Result 9.4 ng/mL (range >3.0).

Yes, well, that's what we have been told, probably ever since the different types of cholesterol were identified. It's what most of our primary care providers are still telling us, it's what the commercials tell us. But researchers (up until now at any rate) have been learning a great deal about HDL. Nevertheless, the universe of what we still don't know about HDL is vast. And since I can sustain only a 35% level of understanding when I hear lectures on HDL, I will have to nutshell my layperson's understanding, which is that at this time, it's possible or likely that HDL-C levels are best understood as U-shaped, that there's a sweet spot right there in the dip of the "U" and anything before or after is not ideal. This is why I said what I did earlier about the "good" and the "bad" being oversimplifications. The research has long since moved on.

There's a lot of talk about how the focus should be on functionality, that you want to make sure that all that HDL is performing how it should be.

And now, that's it, I've exhausted my ability to explain my understanding of HDL!

Since some time between 2010 and 2014, my HDL-C has been going up and you might even say elevated. The last time I could find in my records that my HDL was normal was in 2014 when it was 67. Last week, it was 101, and it’s been 88 and above since about 2015. A significant life event happened in 2010 when I was diagnosed with Celiac disease and in May of that year began a gluten free diet. An informal perusal of a previously posted topic on HDL on this forum shows that a lot of members responding had high normal or high levels of HDL, so it doesn’t seem to be that unusual. But because my HDL numbers have been so high for so long, I am now officially concerned enough that I will probably reach out to a cardiologist who specializes in lipids. I would like to know if I should have a genetic test, as a specific genetic mutation can be one reason for high HDL numbers. I will also ask if he/she thinks a cardiac work up including a coronary artery calcium score should be considered. I think by now most of us are done with the ridiculous good and bad cholesterol labels; the amount of what we don’t know about HDL is quite large. For me my questions include is it a matter of production or an inability to clear HDL, and are the high levels having an effect on my vasculature (or a result of a less than optimal vasculature)? My last TSH level was normal, so it's likely not a thyroid issue. I also take B12 regularly. I’ve read that niacin can cause HDL levels to go up, but B12 is not niacin, and I could find no definitive link between robust B12 supplementation and abnormally high HDL levels. Any input is appreciated!

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.