trents

This article focuses on this phenomenon in children but mentions previous studies have pointed to a similar phenomenon in adults. According to this Turkish study, children with frequent canker sores are six times more likely than those in the general population to test positive for Celiac disasease.

https://www.beyondceliac.org/research-news/kids-canker-sores-celiac-disease/?utm_campaign=Research Opt-In&utm_medium=email&_hsmi=90578227&_hsenc=p2ANqtz-_cBnHe75E0mybfEyF9NWMz3PpGRRRYKGCnanGZWxu39eQ5tvj_V2XUFZjzZicMrw-MezvDF7ygFUF-T-mWTiXoaBmwkg&utm_content=90578227&utm_source=hs_email

There is hardly a medication that does not have potential risks. I think we need to see this as trying to correct what we know to be a problem with a remedy that we know works but we also know has the statistical potential to cause other problems and then weigh the benefit/risk ratio. I speak in general terms here, not specifically of PPIs. 

And each of us has a responsibility to research and educate ourselves on the risks involved as well as the alternatives. The advent of the Internet makes an abundance of information available to all of us and the information shared by members of this forum is proof of that. No more can we pass all the blame over to our doctors for mismanagement of medications. Each of us has the responsibility to be our own advocate.

Wow! I can feel your anger as I read your words.

I don't know the exact time in life of the onset of my celiac disease. I can trace it as far back as 37 years of age when I when I went to donate blood at the Red Cross and they turned me down because of elevated liver enzymes. I wasn't a drinker and had not practiced risky living so, feeling to be in good health, I didn't think more about it. Fast forward about 5 years and I was by that time working in a hospital and part of my benefit package was an annual CBC with blood chemistry battery included. The liver enzymes were still slightly elevated. Over the period of several more years other blood values got out of whack as well: low albumin and total protein and low iron levels. Finally, I went to my GP who ordered testing for various kinds of hepatitis and a couple of other tests but they were all negative. He was stumped. Finally, he said, "I guess your just that way. Maybe that's normal for you." I was not satisfied with that explanation and soon I scheduled an appointment with a gastro doc because the liver enzyme thing really worried me. Right away he did a blood test for celiac disease antibodies which was positive and then he did the endoscopy to confirm. That was 18-19 years ago. About that same time I was suffering from GERD with a hiatal hernia. The gastro doc put me on Protonix. I'm 69 now and trying to wean myself off or at least down from the PPI. 

Shortly after the Celiac Dx I also had some imaging done for back pain and discovered that I had osteopenia so began taking calcium supplements which I have sense discontinued as I don't think there is good evidence they really help. I also have a little scoliosis and some definite kyphosis but there is a strong history of kyphosis on my mother's side so not sure how much of that is due celiac disease and/or LT PPI use. 

Sometimes I get angry when looking back to when my primary care dock said, "I guess you're just that way." But I must remind myself back then there was very little general knowledge of celiac disease. I was blessed to have good medical benefits that allowed me to become aware that something was not right in my body and to allow me to schedule an appointment with a specialist who knew enough to check for celiac disease. I am also blessed to be able to afford to buy gluten-free food and all the supplements I need. I am in good general health and able to be active so I am thankful for those things. After I went on a gluten-free diet the liver enzymes normalized but the albumin and total protein have gotten back into the normal range only in the last few years. Two endoscopies within the first three years did not show recovery of  the villi. I suspect I was getting glutened more often than I realized as I am not a particularly sensitive Celiac so it's hard to tell unless I get a gross amount of gluten. Retirement has allowed me to be more consistent with my diet and an endoscopy done about two years ago showed the villi to be restored. That was really good news! 

My faith in Christ helps me keep a healthy perspective on the ebb and flow of life. There is so much we could all dwell on and become angry about but there is so much more to be thankful for. I am reminded of the old gospel hymn: "Count your blessings. Count them one by one. Count your many blessings and see what God hath done."

I seldom get sinus infections anymore or even common colds. Of course, a big part of that may be that I'm retired and don't get the exposure to viruses like I used to in my working years.

As I indicated earlier in this thread, I'm in the process of weaning myself off of my PPI or at least moving to a lower dosage.

Found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110863/#:~:text=Nonjudicious use of PPIs creates,calcium%2C iron and magnesium metabolism.

It indicates that vitamin and mineral deficiencies from chronic PPI use seems to be mostly a concern with the elderly and those on kidney dialysis. I guess I might fit that first category.

Good stuff, Kate333. Thannks! I can understand your frustration and pain. There is so much being learned about Celiac Disease these days. We know so much more that we did 15-20 years ago when I was first diagnosed. Slowly, doctors are catching up to the research but that seems to be the way it is with most every disease.

Personally, I developed celiac disease well before I was ever on a PPI but the striking factoid of the study you cite is the escalating metrics of celiac disease diagnosis being parallel to the advent of widespread PPI therapy. But there may be other factors as well.

27 minutes ago, Kate333 said:

"But I think it's a false sense of security to assume that PPIs will ever "protect you" from EC or "prevent" BE from turning into EC (or even HGD, a precursor). I am not aware of a single study proving that . . . If anyone knows of a single study (not funded by Big Pharma/PPI corporations) concluding that PPIs actually prevent EC, feel free to prove me an ignorant fool by citing it."

My apologies if I misrepresented what you said but the remark about Big Pharma seemed to qualify your previous remark and imply (to me at least) that Big Pharma studies did show a link. Granted, I have not researched this.

But what I can tell you from my own personal experience is that PPIs did give me release from extreme discomfort (heart burn) and even, it seems, frequent sinus infections and hoarseness. Now I could be popping Tums or Gaviscon throughout the day but that would just be changing the gut PH in a different way with the same implications and would be far less convenient.

Some studies may never happen if not for "big pharma". Just because studies are done by big pharma doesn't automatically disqualify them as being legitimate. For all their evils, it may also be true that we owe a lot to the big pharmaceutical companies. And whereas you might find doctors who claim BE and EC are not linked to long term acid reflux, I don't think they speak for the majority of doctors. I would also add that most doctors I know have enough integrity to draw their own conclusions from the research that is available combined with what they actually see in practice. 

We do know that many neoplasms have their origin in long term processes that do damage to cells.

I am not one of those who believes all health problems can be corrected by vitamins and supplements. There is a place for traditional medicine as well as naturopathy.

4 minutes ago, cristiana said:

Bizarrely last time I asked about this the pharmacist said 10mg Omeprazole was the same as taking 20mg Nexium.  Do you think she was right about this?

 

 

I wouldn't know about that. But I think 20mg of Omeprazole is the most commonly prescribed dosage for that med. I believe it would be considered the "standard" dosage. But traditional antacids such as Tums and Gaviscon can be helpful in bridging when you are trying to get off a PPI and they should be well-tolerated. Ultimately, the way any of those things work is just to raise the PH of the stomach's contents, whether by reducing the amount of acid produced or by neutralizing it. But if you find that you are having to take antacids more than a couple of times per week after trying to eliminate the PPI you might as well go back on the PPI and live with as low a dose as will give you good coverage.

We sometimes lose track of the fact that people with GERD often have neurological or physical impairment of the esophagial sphincter mechanism. This means that the one-way valve closing off the stomach from the esophagus is not closing as tightly or completely as it should. Often, this is caused by a hiatal hernia that creates a distortion of the sphincter. So, in those cases the problem is not with he stomach acid itself but with where it winds up - in the esophagus and even into the throat/larynx/sinuses. Unfortunately, the only way to combat that is to reduce the amount of or neutralize the stomach acid. They used to do these surgeries where they lapped a chest muscle around the esophagus to simulate the sphincter (called a "lap nissen fundoplication") but that often gave undesirable results so when PPI's came along it was considered to be a non-invasive, more reliable and less expensive way of accomplishing the same outcome.

My GI doc contends that a lot of the negativity surrounding the use of PPI's is scientifically unfounded and has not been empirically demonstrated to be true. The bulletin board in his treatment room is covered with articles from medical journals that substantiate his claims. And this guy is a Seventh Day Adventist and if you know anything about that faith group they are very health conscious.

And it needs to be said that whatever remedies prove successful are vastly preferable to Barrett's disease and esophagial cancer. 

When there is impairment of the esophagus' closing mechanism such as can occur with a hiatal hernia, no amount of vitamin supplementation will correct that. Changing eating habits, supplements and elevating the head of the bed and other lifestyle changes can help but the underlying physical problem is still present.

So for me, who does have a hiatal hernia, where I'm at is making a patient effort to reduce the dosage of or possible get entirely off of PPI therapy but not at the expense of generating worse health issues down the line.

I caution you against going off a PPI "cold turkey". I you have been on a PPI for any length of time you are likely to get a gastrin rebound, a well-documented effect. I have tried going off my PPI cold turkey twice but with painful results that took a week or more to get back under control. Getting off a long term administration of a PPI can be very difficult and should be done very gradually. 

Currently, I am trying to wean myself off omeprazole or at least down to a lower dose. I seem to have succeed in reducing the dosage from 20mg daily to 10mg at this point. I asked my doctor to prescribe 10mg caps to allow me to begin substituting 10mg dosages every fourth day, then every third day, then every second day, etc. over several weeks time. I am down to 10mg daily and it seems to cover me. I have also been taking extra Niacin, Riboflavin and Magnesium. Soon I will try to intersperse some days with no PPI and supplement with an over the counter antacid as necessary.

Take it slow.

https://www.webmd.com/heartburn-gerd/news/20090702/stopping-ppis-causes-acid-reflux-symptoms#1

Scott, are there cosmetics that have gluten-free on the label? I have not seen that but I don't look for it either in those kinds of goods so maybe I just missed it.

I also think it is true that transdermal delivery of any substance is less, much less efficient than ingestion or inhalation. 

Found this: https://www.mayoclinic.org/diseases-conditions/celiac-disease/expert-answers/celiac-disease/faq-20057879#:~:text=Some people develop a form,by skin contact with gluten.

According to this article from the Mayo, transdermal guten exposure is not a danger.

Kate333, I'm not so sure about that. If consumers would start asking, "Where is this made" and refuse to purchase meds and personal health products not made in the USA I think over time it would happen. But of course, this presupposes there are options available. I seem to remember early in his tenure, President Trump leaned on some automakers to keep their plants in the USA and was successful. But at the same time, Americans would need to become willing to spend a little extra money to buy USA made products.

Have any studies been done on the actual effect on Celiacs of exposure to gluten transdermally? I could be very wrong but it strikes me that this might be an unfounded fear as long as hands are washed after application and it is kept away from the lips and the mouth.

Yeah, as CL said, pharmacies change suppliers (especially for generics) like you and I change socks. It's all about where they can get them the cheapest at any given point in time. Also, there's no guarantee that even with name brands the formulations won't change. And it can be difficult to get a definite answer when trying to determine if a med has gluten. All the more reason to start moving production back to the USA where there is better regulation.

Sorry, CL I see that I misread your post the first time.

10 minutes ago, cyclinglady said:

I think you are on the right path.  Your numbers have gone down.  It can take well over a year for those to drop in the normal range.  And they might not ever drop into the normal range.  If so, I think you have to gauge how you feel (symptoms).  

The gluten-free diet has a steep learning curve.  I was lucky.  My husband had been gluten-free for 12 years prior to my diagnosis.  So I really knew the diet well.   
 

Here is the reality.  We are older.  It takes a lot more time to heal and a lot more time  to change behavior.  If your brain and nerves have been damaged, it can take even longer.  I mention brain because of anxiety, depression and IBS.  I would look for ways for you to handle stress.  Like do not watch/read the news!  Learn relaxation techniques, exercise, engage in doing something good for the community, etc.  

What do I do to relieve stress?    I pull weeds.  Work in my garden.  Walk.  Ride my bike.  Call friends. Hang around this forum.  I practice deep breathing and visualize laying on the beach and listening to the ocean waves.  I play an instrument.  Find something you like.  

I do not worry about toothpaste, floss, lotion, etc.  but I make sure gluten is not in my shampoo, hairspray, or lipstick (I use Gabriel which is certified gluten-free.  I still wear it in the house.  Joan Collins once said lipstick is her first go-to cosmetic when I was young.  It was not my first choice but with my gray hair, I need color!  Thankfully, I have some cute masks I sewed).  
 

Medications can be a problem.  Rare, but possible, especially now with our supply chain issues where generics come from India or China (that would be ALL antibiotics in the world).  Look for the inert ingredients on pillbox which is a US government site. 
 

Yikes!  I need to go.....more later.  

 

 

CL, why do avoid gluten in shampoo but are not concerned about it in lipstick and toothpaste?

I think it also needs to be said that this is one of the hardest concepts to grasp for newly diagnosed Celiacs, that something you are eating is causing the body to attack itself. I think that's why it's so hard for those new to the experience to grasp that it is not an allergy.

2 hours ago, DJFL77I said:

its still an allergy though.. it causes allergic reaction

People can have an allergy to gluten (as they can to almost any protein) but Celiac disease is classified as an autoimmune disease. When you read food labels gluten is found in the allergy information but that's because the food companies don't have a category for autoimmune disease triggering ingredients. Antibodies are produced anytime the immune system is engaged, not just with allergies. Think of COVID-19. Consuming gluten causes the body to attack it's own tissues, that's why it's called an autoimmune disease.

1 hour ago, cristiana said:

I liked it because it didn't cause bloating. In fact, I'm wondering if Nexium is causing bloating and this extra pressure in my upper abdomen is exacerbating the back pain.

 

That sounds like a plausible theory. Ranitidine (Zantac) is not a PPI but it has the downside of users developing tolerance to it such that the dosage needs to be increased. Have you tried different PPIs and would your insurance cover alternative PPI's or is it possible that your PPI dosage could be lowered? The bloating might be caused by too low of a PH resulting in poor digestion of some carbs and the buildup of methane.

Let me say that your next step should be to get tested for Celiac Disease. It is not an allergy to wheat, it is not an intolerance. Celiac Disease is an autoimmune disease. The ingestion of gluten triggers an inflammatory response in the small bowel that damages the "villi" (the lining of the small bowel where nutrient absorption takes place). celiac disease has all kinds of spinoffs, many of them related to nutrient deficiencies. Headaches/migraines is one of them. But in the long term, celiac disease is a serious condition that can cause osteoperosis, neurological damage and liver damage, anemia and a host of other things. There is a strong correlation between Celiac Disease and headaches.

There are blood tests to diagnose Celiac disease but that should be the first stage of diagnosis as they are not always reliable. The gold standard test is an upper GI where they biopsy the small bowel lining and examine the condition of the villi under a microscope. An experienced gastro doc can sometimes recognize the presence of Celiac Disease during the scoping by the general condition of the small bowel lining.

5 minutes ago, cristiana said:

Yes...  I think that is also possible.  My son literally just now asked me to switch the light on which involved putting my arm upwards behind me, as if I was swimming the backstroke, and I turned, and the pain came back.

Sometimes I feel like I'd like to pay for a full body MRI scan and find out what on earth is going on.  Since my diagnosis I've had so many weird pains, doctors visits, consultants visits, scans.  My friends hardly dare ask how I am. However, if they have anything wrong with them they come to me as they are sure that I will have had it too and will empathize.   I got a good chuckle out of this!

I'm just wondering now though if some of these weird things could be something to do with the ppi I'm taking.  In the past it has never caused me problems, but googling side effects it's interesting how upper back pain and dizziness are mentioned. 

I would not think a PPI would cause these symptoms. If anything, it should eliminate it being an esophagial issue as long as the PPI dosage is giving you good coverage.

Have you been officially diagnosed with Celiac disease?

I'm just wondering why you would purposely eat something with wheat in it if you know it gives you headaches.

Not to alarm you, but upper back pain and nausea can be associated with a heart attack in progress. Particularly in women, heart attack symptoms can be atypical. That is, not in the chest where you would expect. And we all know too many people who went in for a physical and the doc said, "Your heart is in good shape," and they drop dead the next day.

But you also said the pain is associated with arm movement. That doesn't add up to gastritis. It sounds more like a neuro-muscular problem to me. I sometimes get pain in my back around the scapula area. My physical therapist tells me it is referred pain from nerve irritation in the facets of the cervical spine. I can push on the spot where I feel the pain but that does not cause discomfort.