trents

My labs are all in the normal range now. Total protein and albumin are near the low end of normal but that is an improvement. For 20 years one or both were below normal. That includes about a 6 or 7 year pre celiac disease Dx span. I've been on PPI therapy for GERD/hiatal hernia for 16-17 years.

But all this discussion has started me thinking that when I have clusters of headaches/migraines it may be a time when my SB microbiology balance is worse than usual for whatever reason so as to make for higher than usual histamine levels. It also may be likely that I'm often on the cusp of that and just get tipped over it by something. Spring of the year when pollen counts are high is the worst for headaches/migraines for me.

Yes, I am aware that the sulfites in wine can be the culprit. But thanks for the reminder. Sometimes with multiple options it can be difficult to sort out.

I recently switched to Mg Gycinate and so far no issues.

35 minutes ago, Iiv said:

Great!! It's going to be interesting to see what you think of them. 

But.. 

It sounds cruel to try to get a headache ?. 

Isn't that a wee bit to much to ask? What if the pills won't work? 

 I received my blockers today. Standard h1 (desloratadin) and h2(ranitidin). They worked awesome until recently. Quick fix for high energy levels. But it hurts when they are done with their work.?. 

If the pills don't work with the wine test, I can take my Imitrex which does.

Thanks for the info and the links, Posterboy. I note one factoid from the last link you gave that caught my eye and that is a risk factor for SIBO associated with low gastric acid. Since I'm on long term PPI therapy, that could be relevant to me. I wonder how hard it would be to get a primary care provider to order a breath test. But then again, those breath tests are subject to so many variables that there reliability is questionable. Might be one of those things you just treat the symptoms and if there is improvement you can assume you have successfully identified the issue.

Well the DAO pills came last week but I'm kind of at a loss as to how test their efficacy. I've been migraine free of late. I'm thinking I'll have to buy a bottle of wine to test this. If I drink a full glass of wine it will almost always give me a headache and alcoholic beverages are one of the high histamine foods you see in most lists. But some people fell it's the nitrites/nitrates in wine that are the headache trigger.

4 hours ago, cyclinglady said:

Does your primary offer it every year?  If so, consider taking it again.  I am not a doctor, but I would think it would be prudent.  Again, with a clean colonoscopy, I think you do not need one for another 10 years and that FIT test was probably tripped by other issues (like all that vomiting you described and being on a blood thinner).  

 

Not sure if my primary offers the FIT annually but I'm sure she would be willing to order it again seeing as how it was positive recently. Yes, it would be prudent. I agree.

I assume you mean the FIT when you inquire about the GI doc repeating the test. He did not mention that and I got the impression he's not a real fan of the FIT since a positive result can be produced by so many things that are just transitory in nature. But I'm sure my primary would be open to it.

I recently had an upper GI endoscopy and a follow-up visit with my gastro doc. While waiting for him in the exam room I was reading the headlines of some medical research articles he had pinned to the bulletin board that had to do with PPI research. At the end of my follow-up visit with him I asked him about some of those things on the bulletin board. The long and short of what he told me is that recent studies with better controls have shown that a lot of the concerns about long term PPI therapy have been debunked. Among them are:

1. That long term PPI therapy contributes to higher incidence of CRC (cholo-rectal cancer)

2. "       "      "      "       "          "   osteoporosis

3. "       "      "      "       "          "   dementia

The doc said the problem with a lot of studies that seemed to indicate otherwise is that they are not longitudinal studies and so premature conclusions were drawn.

I was diagnosed with celiac disease about 16 years ago but a couple of upper GI endoscopies within the first three years of diagnosis showed villi blunting still unchanged. I was discouraged then because I was making every effort to eat gluten-free. I had pretty much concluded I had the refractory type of celiac disease. A couple of weeks ago, however, I was referred by primary care to my gastro doc for followup of a FIT stool test that was positive. The FIT test was ordered in response to three episodes of protracted vomiting with a week and a half. I thought I saw what could have been blood in the puke from one of those episodes. Or maybe it was a pimento or a chunk of tomato. It can be difficult to visually discern those things under the circumstances.

Since my gastro doc had already done a colonoscopy back in December he opted for an upper GI this time which showed no lesions. But there were two pieces of unexpected good news:

1. My hiatal hernia measured 2.5 cm intead of 9 cm as it had been measured originally, some years ago. Doc said it is difficult to get accurate measurements on those because of distortion from movement of the scope but he said it certainly had not enlarged any.

2. And the best news was that my villi now looked healthy. That's a big PTL! Since retirement, my efforts at eating gluten free have paid off. I now have more control over where I ate and what I ate than I did in my working years even though I did my best back then.

The reason for the positive FIT test is still uncertain but I probably should have waited longer after my last episode of emesis before taking the test, especially since I'm on a blood thinner. The GI doc thought the positive FIT was likely caused by trauma from the vomiting.

Will do. I'm already taking loads of B vitamins and some magnesium supplementation. I have to be careful with magnesium and zinc supplementation because they definitely have a laxative effect on me.

Also found this: https://www.ncbi.nlm.nih.gov/pubmed/29475774 

The link above particularly relates low DAO with migraines, which is what I need help with as a Celiac.

Sounds promising and I note there seemed to be no side effects with the supplementation:

"No adverse effects were registered in patients treated with DAO enzyme."

Where can you get this enzyme?

Edit: Amazon sells this. Just ordered some.

Scott,

What does the testing involve?

It's no secrete that foods high in nitrates (found in bacon and other processed meats, for example) seem to trigger migraines in some people. Now there is research to indicate that an abundance of certain bacteria in the digestive system may be the key to this phenomenon. These bacteria convert nitrates into nitrites that then enter the blood stream and are converted to Nitrous Oxide, a vaso dilator. It is believed that many or most headaches are due to dilation of the vascular system feeding the brain. Migraine meds such as Imitrix (sumatriptan) are vaso constrictors and that's why they work to give relief. 

https://www.sciencedaily.com/releases/2016/10/161018132608.htm

As you well know, Celiacs suffer from headaches more than the general population. I'm one of them. Though the article linked above does not tie this to Celiac Disease, it occurs to me that the connection here for the Celiac Disease population plagued with headaches is likely the dysfunctional gut with it's skewed bacterial populations.

No, I do not use aspirin but do use other NSAIDs occasionally. I am on warfarin for a genetic blood clotting disorder and that, together with the damage to SB already caused by Celiac Disease, I am very careful to not use NSAIDs frequently. I do use them occasionally for ortho-related pain because they work so well and are non-narcotic. Acetaminaphen doesn't do much for me. 

I suspect the same thing, notme! There are times when I can eat something and it doesn't bother me and other times it makes me quite ill. I think there are a lot of variables here. One of them is how things are processed. There are several seed foods that give me no problem if they are washed and/or cooked. But they reliably make me ill if I consume them in raw, unwashed form.

I did one of those hemacult stool sample tests recently, or whatever they call them these days. It came back positive so I have a consult scheduled for that next week. A lot of things can produce blood in the stool. Everything from cancer to hemorrhoids to peptic ulcers to a burst diverticuli. But I wonder if there could be a connection between my recent episodes of nausea/diarrhea and the blood in the stool. Must be a very small amount, not enough to discolor the stool.

Our systems are all so different. Corn (and rice) are easiest on me whereas I know corn and corn products give lots of others issues.

Good suggestion, notme! about varying the diet to avoid histamine buildup. I've thought about that. I tend to get in ruts with my menus.

https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--114197/?utm_campaign=Research Opt-In&utm_source=hs_email&utm_medium=email&utm_content=72478196&_hsenc=p2ANqtz-8cBCeWpQSG8tjxT3AC5kO9JlVU9sKiGcArKDefDbz0UI0-FrJiSWvmuEAJ7HWszix_3WVyFj1AaK8h8iqwb5bG0LBdew&_hsmi=72478196

A potpourri of issues discussed in this article but here are some things that stood out to me: "Similarly, in Robert’s multinational study reviewing biopsies of patients done initially and at follow up, persistent symptoms were found on the second biopsy in 78 percent of patients with damaged villi and 66 percent of patients who had normal biopsy . . . More than half of 184 patients in the study who had a second biopsy had persistent damage. In addition to the findings related to symptoms and damage, the study was designed to show physicians how to  correctly take samples when a patient needs a second biopsy so changes are not missed."

Also, it seems persistent diarrhea is the one symptom that correlates well with continuing villi damage: "Diarrhea was the only symptom the predicted intestinal damage found when a biopsy was done . .  . The study found symptoms of celiac disease are inconsistent in predicting the results of a blood tests and biopsies. This inconsistency led researchers to conclude symptoms should not be the only thing used to evaluate a patient’s response to a gluten-free diet. However, frequent and severe diarrhea should prompt a reevaluation of the condition of the intestine, they noted."

Finally and this is long overdue, researchers are beginning to look at the impact of anxiety on Celiac sufferers: "Peter Green, MD, director of the Celiac Disease Center at Columbia University, asked if the study evaluated whether the gluten transgressions being detected with the urine and stool tests had caused the study participants any real harm. “We are concerned we are driving these people crazy,” he said in a question and answer period following the lecture.  Green noted that researchers are increasingly looking at the effect anxiety about the gluten-free diet has on patients."        Celiac disease can become bigger than life if we let it.

Meat and dairy seem to be the easiest things for me to digest. I know that is the opposite of many peoples' experience. I can do essentially all veggies as long as they are cooked well. I don't do good with "woody" things.

Posterboy, sometimes it just boils down to pick your poison. None of us likes taking these prescription meds but it might be the better of two evils. And how would one determine what the PH of the gut is, anyway? Whether or not it's below 3.0? 

13 hours ago, cyclinglady said:

I was in H2 antihistamines for six months when I developed autoimmune hives after a gluten exposure.  (Hives started every afternoon with intestinal pain and the hives start racing up and down my body.). A few months later,  I developed GERD like symptoms.  I kept trying to figure out how gluten was getting into my diet.  Turns out it was not.  A repeat biopsy found healed villi, but revealed autoimmune gastritis.  What I learned is that is is not always gluten as a culprit.  

Autoimmune Gastritis causes low stomach acid.  

What were you originally put on H2 antihistamines for if I might ask? Was this done to to treat reflux issues or some other allergic condition?

The problem with H2 blockers has always been you build up a tolerance to them whereas that is not a problem with PPI meds.

In addition, PPIs are considered more appropriate for GERD whereas H2 blockers are generally used for peptic ulcers:

https://www.healthline.com/health/gerd/h2-blockers#h-receptor-blockers-vs-proton-pump-inhibitors-ppis

Meat and dairy seem to be the easiest things for me to digest. I know that is the opposite of many peoples' experience. I can do essentially all veggies as long as they are cooked well. I don't do good with "woody" things.

Thanks for the links. Lots of reading there for me to do.

Concerning low stomach acid and inability to digest proteins, I am on long term PPI therapy for GERD. Tried going off of them but just can't. Lab work always shows my total protein and albumin are borderline low but I have always attributed that to leaky gut, i.e., losing protein to the lumen. However, I experience no illness with animal proteins. Only seems to be an issue with raw seeds (possible exception would be hemp) and some raw veggies, especially broccoli. Raw broccoli has always given me a sour stomach, even when I was a very young man.

Posterboy, your analysis agrees with my experience with some of these seeds in that the difference maker can often be how they are prepared and the effect that has on the plants/seeds natural defense mechanisms. At least, I can see that very clearly with quinoa in my real life experience. I have not really experimented with chia or flax. Last I tried it, flax meal did not give me an issue but I haven't tried it in a while.

But how do you wash chia seeds? They quickly turn into a gelatinous goop when put in water. And the one thing that does not fit this pattern in my experience is the hemp protein in the snack I mention above. I would assume that is a processed ingredient and the hulls have been removed. Perhaps that reaction is truly to the protein and not to the saponins.

Found this: https://www.scientificamerican.com/article/are-saponins-in-quinoa-toxic/  In reflecting on my recent illness experiences there were suds in the puke after eating the snack containing hemp protein.

I have had three episodes of protracted emesis and diarrhea in the past two and a half weeks. I realized the common denominator was that this happened within a couple of hours of eating a gluten free snack containing hemp protein called JoJo's Guilt-Free Chocolate. Looking back about a year ago I remember having the same problem after consuming a health shake that I had added hemp hearts to. The odd thing is that only a few years ago I was regularly adding hemp hearts to my hot gluten free cereal at breakfast without any issues. I'm not positive about this but I believe I have seen this same pattern with chia seeds in that they were something I could consume without issue at one point but then started having major problems after not eating them for a period of time.

In addition, I have always had issues with unprocessed quinoa which I think is due to the resins in the seed coat. Washed and cooked I have no problem with it.

Seeds are not liking me these days and the list is growing it seems.

Anyone else having similar experiences?

For quite some time I have been looking for a vendor that sells corn bran without success. There must not be much of a market for it. Eureka, I finally found one and they were able to confirm with their supplier that it meets the current gluten-free standard of <20ppm of gluten. In case anyone is interested, here's the link:

https://shop.honeyville.com/corn-bran-5lb.html