Am I celiac or not?

[aya]

I am almost completely lost in my symptoms and tests. 

Do you think these symptoms are enougt to say that I am celiac?

I have the same weight since I was 16 yo, now I am 45 and I have 47 kg - I can’t gain or lose weight.

I have huge problems for last one year and half with reflux which is my primary symptom. Heartburn actually  with numb tongue and burning mouth. My GI doc say that all my problems  are caused by LES (lower esophageal sphincter) not working proprely and that I have bad motility and dyspepsia. I am taking  lansoprazol for a year now, but the daily dose helps me just through half od a day. And I can’t eat “forbidden” food when I am on them. And I feel awful nausea when I take lansoprazol.

Blood test for IGA was 16,4. For celiac disease it should be over 20. That’s why my doc said that we won’t do any other test, because this one is negative.

Bur I am always bloated, with gases, belching, pain in stomach and lower abdomen, usually one hour after eating. Also have pain just under upper right ribs. Always constipated and nauseous.

Fatigue is worse after I eat something with flour and sugar. But I can eat without any problem meat, potatoes, lettuce, beans, lentil...

I have reflux usually after eating peppers, tomato, black pepper, chocolate, but lately I can’t eat nothing. I get reflux from nothing. I had extreme reaction to coffe with sugar one months ago and since than I can’t get rid off reflux. 

I also have undigested food in stool lately too.

VItamin D level is 16.

Iron in blood is lower each month.

Bile is a bit high. All other stuff is normal. I am waiting for magnesium, calcium and vitamin b 12 levels.

is it possible that I have celiac disease? 

I am on diet last 3 days and I have noticed that gases and burping are getting better, I am not bloated so much anymore, but reflux still persists.

If this is celiac disease, how long I can expect till I will notice some improvement?

Did anyone had same problems with reflux and how dis you solve it. I would appreciate it a lot!!!

Best,

Aya

[PK-432]

As your vitamin d and iron levels are low it suggests celiac disease because if I am not wrong ,your iron levels is low without any reason. 

To rule out confusion you should go for celiac gene test. Because if your gene test is positive then you should go for  biopsy of small intestines to confirm the diagnosis about celiac disease.  

I also have heaviness,nausea and various other symptoms I am on gluten diet since one year and my gene test is positive for celiac disease and symptoms also suggest.  So, according to my knowledge your all symptoms will get better after you start gluten free diet if you have celiac disease or gluten sensitivity.  

Best of luck! 

[cyclinglady]

How did you GI diagnose you with LES?  Did you have an endoscopy then?  What did the pathologist’s report  indicate?  Exactly which celiac test was given?  This is not clear.

In any case, I would recommend getting a second opinion from another GI.  Something is wrong!  

 

 

 

[aya]

23 minutes ago, cyclinglady said:

How did you GI diagnose you with LES?  Did you have an endoscopy then?  What did the pathologist’s report  indicate?  Exactly which celiac test was given?  This is not clear.

In any case, I would recommend getting a second opinion from another GI.  Something is wrong!  

 

 

 

Thank you so much for your answer.

Yes, he did endoscopy last year and this year. Last year everything was fine except LES, this year it was again nonfunctional LES and esophagitis grade B. 

Stomach and duodenum are fine.

I am not sure if he took also biopsy. I was trying to convince him to take it, but not sure if he did. I have appointment in two weeks and will see than.

Blood test was IGA for antibodies gliadina which is positive if is 20 or more. Mine was 16,08. 

What should I do? Should this be enough to make further research?

[aya]

1 hour ago, PK-432 said:

As your vitamin d and iron levels are low it suggests celiac disease because if I am not wrong ,your iron levels is low without any reason. 

To rule out confusion you should go for celiac gene test. Because if your gene test is positive then you should go for  biopsy of small intestines to confirm the diagnosis about celiac disease.  

I also have heaviness,nausea and various other symptoms I am on gluten diet since one year and my gene test is positive for celiac disease and symptoms also suggest.  So, according to my knowledge your all symptoms will get better after you start gluten free diet if you have celiac disease or gluten sensitivity.  

Best of luck! 

Thank you!!!

I am trying to convince my doctor to make genetic test too, but he is telling me that it would make no sense, since blood test was negative.

Yes, I have low iron and ferritina with no reason for years now and nobody seems to bother. I had iron low long before I started taking ppi, so can’t blame ppi for this.

Best,

Aya

[tessa25]

If you only had the TTG IGA test then you could still have celiac. You have to be eating gluten daily for 12 weeks before testing.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You can either have another gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your new gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

Oops, if you're outside the US you'll have to convince your gastroenterologist to do the full panel.

[grannykathy]

Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.

[PK-432]

12 hours ago, aya said:

Thank you!!!

I am trying to convince my doctor to make genetic test too, but he is telling me that it would make no sense, since blood test was negative.

Yes, I have low iron and ferritina with no reason for years now and nobody seems to bother. I had iron low long before I started taking ppi, so can’t blame ppi for this.

Best,

Aya

As your ferritin, vitamin d and iron levels are low without any reason it strongly suggests celiac disease but for proper disgnosis gene test,biopsy is required.  You should consult competent gastroentrologist with good repute. 

I am in search of  competent gastroentrologist since 6 years and still searching.  

Be sure to be on gluten free diet till biopsy but remember that gene test does not  require to be   on  gluten free diet. 

Welcome,I am always here for any suggestion or guidance.  I am doing research on gluten free, celiac disease since 2015 but I am not diagnosed up till now. My nephew is diagnosed with celiac disease and I am also hopeful that I will be diagnosed soon. 

[cyclinglady]

Like Tessa, I would recommend getting the full celiac blood panel.  Why?  If my GI had not ordered the entire panel, my celiac disease diagnosis would have been missed.  I only test positive to the DGP IgA, even in follow up testing.  Then there are also the few celiacs who are seronegative.  If the GI suspects celiac disease (anemia, osteoporosis, family history, other autoimmune), he/she would order an endoscopy to obtain intestinal biopsies.  Find out if biopsies were taken when you next see your GI.  

I understand that sometimes it is impossible to get a diagnosis depending on where you live, financial and insurance constraints.  Consider continuing the  gluten free diet for six months.  My husband went gluten free per the poor advice from my allergist and his Physician some 17 years ago.  The diet worked.  Who would remain gluten free if it was not working?  

The genetic test will help rule out celiac disease as some 30% of the population has the genes that could develop into celiac disease.  That is a lot of people!   Only a very few actually do go on to develop celiac disease.  Even if you have the genes, what does it really tell you?  I think you need to research the benefits of genetic testing more in order to make an informed decision.   If I had to choose between spending money on the genetic test vs the complete celiac antibodies test, I would choose the antibodies test (DGP, TTG, EMA).  

Keep researching because it may not be celiac disease as the root cause.  Has EOE been ruled out?  It is related to allergies.  

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[Posterboy]

Aya,

I think your PPIs are triggering your dyspepsia medical term for indigestion etc.

Often when our stomach acid get's too low we will have issues with CARBS.

They ferment and cause bloating.

Here is a couple article/links about it.

You need to get off the PPIs if at all possible.  Try taking a H2 blocker for two weeks and then stepping off it two weeks between reduction in dosages all the while watching your trigger foods.

Here is a link about "Gastric hypochlorhydria (low stomach acid) is associated with an exacerbation of dyspeptic symptoms in female patients"

https://link.springer.com/article/10.1007%2Fs00535-012-0634-8

taking betaineHCL can also help your digestion if your stomach acid is already too low from taking lansoprazol.

see this topic in the pharmaceutical journal about it.

https://www.pharmaceutical-journal.com/learning/learning-article/question-from-practice-management-of-hypochlorhydria/11120379.article?firstPass=false

as to whether you have Celiac disease or not . ..you might not yet but if you keep taking PPIs you might develop it if you keep taking them for years and years.

PPI's increase your risk of developing celiac disease in the future.

that is over 4 years old that studied this topic of PPIs use and subsequent Celiac disease diagnosis.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/do-proton-pump-inhibitors-increase-risk-of-celiac-disease-r2860/

they (the researchers) concluded  quoting

"The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.

The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship."

and why this is novel research we didn't know why this was so too recently.

see this article as reported by Jefferson Adams on celiacdotcom.  It is good research.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/could-drinking-baking-soda-fight-celiac-and-other-autoimmune-diseases-r4479/

I am also including the medical news today article link on this topic because I think it summarizes these findings well.

https://www.medicalnewstoday.com/articles/321624.php

the articles about about what controls (switches on) inflammation (autoimmune reactions) in the body.

we have microvilli (not villi) that line our organs (especially  the spleen) that alarm our body when proteins are in the body and not in the GI tract.

the spleen is critical is here because it acts like a general of sorts directing our immune system and when gluten or other proteins tricks it --- it attacks our body (villi) by mistake.

And this new research explains why this happens.

quoting from the the summary on celiacdotcom ( again I think the MNT article) goes into more details.

" A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed."

to continue quoting

"The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response."

Which explains perfectly how PPI's could cause someone to develop Celiac disease because it lowers our stomach acid.  And this study points out how raising our pH (lowering the pH) cause the spleen to settle down and stop attacking the bodies own organs (villi) in the case of Celiacs'.

And it 's not just the Villi the body attacks they note it happens in other organs too when the "general" the spleen gets confused the whole body suffers inflammation.

quoting again from the article Jefferson Adams

"That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.

In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."

so getting off the PPI by taking BetaineHCL or if you can believe this research baking soda to raise your stomach acid to natural healthy levels of a pH of 3.0 or less should help your indigestion and help control you GI inflammation from too low a stomach acid.

you can have this tested by doing an Esophageal pH Test or just take betaineHCL and go low CARB and try the Baking Soda in the meantime to see if it helps your indigestion (if it is going to be a while before you can see the doctor again.)

https://www.healthline.com/health/esophageal-ph-monitoring

If it is truly low stomach acid (from taking PPI's) and too many CARBS in your diet then taken BetaineHCL will improve your digestion.  Be sure to always take BetaineHCL wtih food and plenty of water.  Water activates the stomach acid and the food dilutes the Stomach acid to ensure you don't get too much.

If you get a "warm sensation" in your abdomen it is working.

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

I had a similar problem with my low stomach acid being misdiagnosed.

Sorry the explanation is so long but you got a lot going on inside.. . and it takes some time to try and explain it.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[aya]

5 hours ago, Posterboy said:

 

I had a similar problem with my low stomach acid being misdiagnosed.

Sorry the explanation is so long but you got a lot going on inside.. . and it takes some time to try and 

Posterboy,

thank you sooooo much. I can’t tell you how greatful I am for your long and detailed answer.

I have many additional questions (I asked you few more additional questions in my other post about celiac and reflux)

I am just trying to find my underlying condition. I am afraid I’ll have to stay with ppi for two additional months, since I have esophagitis grade b, confirmed with biopsy a week ago. It was first time that I have inflamed esophagus. Last endoscopies showed only nonfunctional LES. I think this inflamarion is because od a panic attack after drinking coffee with a lot of sugar and nausea after that. Some coffees make me sick and some don’t.

I would just like to find out what relaxes my LES and what is my underlying condition. 

Ppis obviously don’t help, since my problema with bloating and gases and reflux are continuing. Stomach hurts when is empty. And I have huge amount of gases 1 hour after eating and during the night 4-6 hours after last meal.

Please if you have any additional idea what could it be, tell me!!!

Best,

aya

[aya]

13 hours ago, cyclinglady said:

 

Keep researching because it may not be celiac disease as the root cause.  Has EOE been ruled out?  It is related to allergies.  

Dear Cyclinglady,

 

thank you for your help.

Yes, I am trying to find out what my underlying condition is. But the doctors don’t help at all (insurance can’t be an issu since I have ful insurance). But they closed my case with the diagnosis: nonfunctional LES with constant taking of ppis for a lifetime. But ppis are making my problems even bigger so I trying to fing out what is happening. I’ve been convincing them to test me for celiac disease and because the result was negative (only IGA testing) they ruled it out.

All I have is low vitamin d, low iron, same problems as before taking ppis, nausea with ppis, still bloating with gases and burping. Ppi works only 12 hours - the biggest dose. After 12 hours burping brings more acid to my esophagus. All that doctors say is that ppis should work and don’t believe me that in my case ppis are working just half of the time. I tried to take half dose in the morning and half in the evening but half dose helps only for 6 hours. So their suggestion is: take more ppis and another medicine for motility. and case closed for them letting me desperate and completely lost.

Any help appreciated,

Aya

 

[GFinDC]

Hi aya,

Some doctors are idiots.  So find a different one if you can.  You may be low on B vitamins also.  B vitamins affect the function of nerves and are important to keep up.  B-12 is sometimes low in people with celiac disease.  I suggest you check your B vitamins levels and also selenium.  I have low vitamin D still.  And I have trouble swallowing sometimes, probably because of low B vitamins for years.

Maybe you can find a good doctor on this website.

Open Original Shared Link

[Posterboy]

17 hours ago, aya said:

Dear Cyclinglady,

 

thank you for your help.

Yes, I am trying to find out what my underlying condition is. But the doctors don’t help at all (insurance can’t be an issu since I have ful insurance). But they closed my case with the diagnosis: nonfunctional LES with constant taking of ppis for a lifetime. But ppis are making my problems even bigger so I trying to fing out what is happening. I’ve been convincing them to test me for celiac disease and because the result was negative (only IGA testing) they ruled it out.

All I have is low vitamin d, low iron, same problems as before taking ppis, nausea with ppis, still bloating with gases and burping. Ppi works only 12 hours - the biggest dose. After 12 hours burping brings more acid to my esophagus. All that doctors say is that ppis should work and don’t believe me that in my case ppis are working just half of the time. I tried to take half dose in the morning and half in the evening but half dose helps only for 6 hours. So their suggestion is: take more ppis and another medicine for motility. and case closed for them letting me desperate and completely lost.

Any help appreciated,

Aya

 

Aya,

As for the Vitamin D subject look for Knitty Kitty on this board she is an expert on Vitamin D.

And why we don't think in these terms today. . . anybody who has low Vitamin D levels or issues with Vitamin D levels technically has Ricketts but it usually not diagnosed as such till you to get critically ill levels.

this is from your other thread on on acid reflux.

"I get bloated with reflux gases, burping 1 hour after eating. My last meal of the day is at 8 p.m. And the worst reflux attac is usually around midnight and 1 a.m."

The burning you feel without food in your stomach is probably a Peptic Ulcer.

see this online article about it.

Open Original Shared Link

quoting under the pain and discomfort paragraph.

"Increase when you have not eaten

"Seem worse at night"

then you have probably developed an ulcer.

most GERD/Heartburn won't cause the burning you are describing (between meals). . ..unless you have an ulcer.

try some marshmallow tea for improved digestion. and slippery elm lozenges (helps sore throats).

You can also take as capsules or physically but this as gum.

Mastic Gum it works really well for uclers.

Here is a very well article on Mastic Gum.

Open Original Shared Link

it is possible to have an allergic reaction to any new supplement that you start so be careful when starting anything new.

Watch out for any signs you might be having to mastic gum if you decide  to take it.  but I have known people to have ulcers that got better when using Mastic Gum especially when used with Betaine HCL.

Mastic gum works well to help H.Pyloria which causes most ulcers.

When our stomach acid gets low we can be over run with all kind of nasty bugs.

SIBO targets the Small intestines.  There is also Candida (yeast infection) etc. and the already mentioned H. Pyloria known to cause ulcers.

See this online article about digestion being a north south process.

Open Original Shared Link

if your stomach acid is low enough to let H. pyloria grow unchecked then an ulcer can develop (hole in your gastric/stomach wall).

A strong acid of pH of 3.0 or less cuts up most bacteria in 15 minutes so H.Pyloria never get's a strong hold . . often preventing an ulcer in the first place.

But stress can cause us to be susceptible to stomach bugs . . think about food poisonings common on cruise ships (ie. 24hour stomach bugs) . . .some get very sick (needing hospitalization etc.) other's only need 24 hours to get over it.

Because not every body's stomach acid is the same strength (due to stress) we all react differently to the same stomach bug.

Here is an article from AARP that explains some of the dangers from taking PPIs.

Open Original Shared Link

In older people have taken it for years it has even been linked to C.Diff.

I mention because the person asking the question also had your symptom's and the explain the step  down method of getting off PPI's often needed to finally get off PPIs for good.

Anemia and Low Vitamin D levels.

quoting  the AARP expert.

"Getting you off the PPI after so long must be done very slowly. Under your doctor’s guidance, you’ll gradually drop the dose in 20-milligram increments, with 10 to 15 days between each taper, until you are completely off the drug. In some people the process takes even longer."

quoting again

"But if you continue to have severe reflux problems, you and your doctor may want to consider the use of an H2 blocker such as ranitidine (75mg every 12 hours) on an as-needed basis." and I find many people have better luck transitioning to an H2 blocker  before transitioning off of a PPI cold turkey due to terrible "acid hypersecretion"

quoting as they note

"The fact that stomach acid is sometimes coming up in your mouth suggests to me that the Protonix is causing what we call “rebound acid hypersecretion.” That’s where your stomach starts secreting ever-increasing amounts of acid to compensate for the drug’s action to slow it down."

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

2 Corinthians 1: 3, 4

³ Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

⁴ Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

Posterboy  by the grace of God,

 

 

 

 

[Posterboy]

On 6/22/2018 at 2:10 PM, aya said:

VItamin D level is 16.

Iron in blood is lower each month.

Aya,

 I didn't get to answer this question last night.

See this thread about how IDA can be linked to low stomach acid.

I didn't know this at the time but Achloryhdria (no stomach acid) has been linked (established) as an Independent cause of  Iron Deficiency Anemia (IDA).

Open Original Shared Link

It (low or no stomach acid) also explains your low Vitamin D levels.

see this blog post about the various Vitamins and Minerals become low in when our stomach acid becomes too low either by having too much stress in our lives or by taking stomach acid reducers to artificially lower it.

Open Original Shared Link

these are some the nutrients they list as becoming low when using PPIs or H2 blockers.

Folate, Iron, B12,Magnesium, Calcium,Zinc and Vitamin D.

The Vitamin D is instructive because we store any excess in our fat.

Here is how the explain Low Vitamin D levels happen when our stomach acid is too low.

quoting Medcline on Vitamin D.

Vitamin D

"Activation of vitamin D occurs partly in the stomach, and then in the liver. If the acid is reduced in the stomach, complete activation does not occur. Data suggests that cimetidine treatment affects vitamin D levels because one month after cessation of therapy, D levels rose significantly. [32, 33] Vitamin D is important for a happy mood and to prevent infections."

So this tells me taking BetaineHCL (replacement stomach acid) should help your Vitamin D levels and presumably these other nutrients like you Iron levels since No or low stomach acid is an independent cause for IDA.

Here is another instructive article as published on Celiac.com on Vitamin D and Vitamin K levels in Celiac's.

This echos what GFinDC noted about his Vitamin D levels.

"Nearly (Only) my words)) half of these vitamin D deficiencies corrected after 1 year on the gluten-free diet."

Which tells me supplementing with BetaineHCL (stomach acid) can help those still struggling to return their (someone's ) Vitamin D's levels to a normal level.

quoting again for easy reference.

"Data suggests that cimetidine treatment (stomach acid reducers) affects vitamin D levels because one month after cessation of therapy, D levels rose significantly".

This can be done presumably complimentary (with BetaineHCL supplementation) if you are still struggling with maintaining or restoring your Vitamin D levels to a normal level after beginning your Gluten free diet --- if the Gluten Free diet alone is not enough to return your Vitamin D levels to normal levels.

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

I only know treating my low stomach acid (being misdiagnosed) helped me with my chronically Low Vitamin D even after going Gluten Free.

Here is my story about how low stomach acid begin misdiagnosed contributed I believe to being low in many of my Vitamins including Magnesium that helped my fatigue, energy levels, and cramps upon supplementing with Magnesium Citrate.

I  also had a B-12 deficiency and Zinc deficiency at the time too!

Again I hope this is helpful.

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

Posterboy by the Grace of God,