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Dumping Syndrom?


Simona19

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Simona19 Collaborator

Hi!

I would like to ask, if anybody was diagnosed with dumping syndrom on the gluten free diet? I have symptoms of rapid and delayed gastric emptying, all of them, but I never had any surgery on my stomach. People will develop dumping syndrom after gastric bypass surgery. I'm on gluten, casein, low sugar and low fat diet + other allergies.

Can change in diet cause this? Can Nexium for GERD- acid reflux be a trigger? I'm on Nexium for 2,5 years now. Can this be related to autonomic neurophaty?

I have the symptoms for one year now. How long will they last? Is there any cure, or just diet?

What can cause this?

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burdee Enthusiast

Hi!

I would like to ask, if anybody was diagnosed with dumping syndrom on the gluten free diet? I have symptoms of rapid and delayed gastric emptying, all of them, but I never had any surgery on my stomach. People will develop dumping syndrom after gastric bypass surgery. I'm on gluten, casein, low sugar and low fat diet + other allergies.

Can change in diet cause this? Can Nexium for GERD- acid reflux be a trigger? I'm on Nexium for 2,5 years now. Can this be related to autonomic neurophaty?

I have the symptoms for one year now. How long will they last? Is there any cure, or just diet?

What can cause this?

Nexium can certainly cause delayed gastric emptying. We need stomach acid to digest food normally. If we use acid blocking drugs, our stomachs will not have sufficient acid to digest proteins and fats. We will not absorb vital nutrients without sufficient stomach acid.

Acid reflux is rarely caused by too much stomach acid. Actually too little stomach acid can cause reflux, because the stomach pH needs to be acidic enough to keep the lower esophageal sphincter (LES) closed. Reflux occurs when the LES opens at inappropriate times. However many foods, drugs and lifestyle habits can also relax the LES and cause reflux. Some of those foods/beverages include: coffee, chocolate, alcohol, peppermint and onions. Some drugs include NSAIDs, asthma drugs, demerol, tetracycline. Some lifestyle habits which encourage reflux include: overeating, wearing tight waistbands, lying down soon after a meal.

Consider eliminating some of those foods, drugs and lifestyle habits to prevent reflux while you taper off the Nexium. For more info about reflux and stomach acid, read "Why Stomach Acid is Good for You" by Jonathon Wright, MD

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cassP Contributor

definitely i believe nexium could cause your issues. just listen to the side effects on the commercial. that stuff is just AWFUL. i wouldnt take any of those pills unless i was in the middle of an ulcer... its really great in the moment- to protect your esophagus & stomach- but in the long run, it will only make all your conditions worse. i was on Zantac for 4 years- and it took me a long time to get my digestion back on track-

unless you're in the middle of an ulcer-> i would very much encourage you to research natural alternatives to curbing stomach acid/gerd, and strengthening your LES.

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Simona19 Collaborator

However many foods, drugs and lifestyle habits can also relax the LES and cause reflux. Some of those foods/beverages include: coffee, chocolate, alcohol, peppermint and onions. Some drugs include NSAIDs, asthma drugs, demerol, tetracycline. Some lifestyle habits which encourage reflux include: overeating, wearing tight waistbands, lying down soon after a meal.

I developed reflux around 24 years of age. I didn't knew was that was. At the beginning I had just burning in my throat. Little by little the burning was unbearable. I avoided spices, citrus fruit and juices. I was taking NSAIDs for pain. At 26 I was diagnosed with asthma. I was taking Adviar and Albuterol for it.

At 32 my reflux was very bad. I wasn't able to eat anything, everything gave me burning in my throat. I was also waking up during night 4-6 times. Suddently I didn't have air. I was choking. I needed air. I mentioned this to my doctor and he gave me Nexium 40mg. All my problems stopped on Nexium. Last year I tryed to take other pills, but the reflux was bad. I actualy felt acid comming up my throat a few times a night. I felt the very strong acid in my mouth. I drank water, but the test was stock with me for about 4 hours. I went back to Nexium.

From all food that needed to be avoided I ate only onion very often. I had some chocolate only when I ate ice cream bar prior going on casein and gluten free diet.

For the past year I was actualy craving chocolate and I bought some gluten and casein free. I also craved sour fish and salt. Which is very streang for me. I never like them before.

What I'm thinking now, that Nexium helped me with reflux, but lovered my acid which now is causing dumping syndrom and vitamin deficiencies. Also low blood pressure and very bad hair lost.

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Simona19 Collaborator

Today I tryed to skipp Nexium. All day my mouth is burning. I need to eat something to calm it down, but soon I eat, I have dumping syndrom, even if I'm eating all day by the rules for dumping diet. I feel like going in cirles. If I try to cure one thing, I will damage another. What should I do?

I saw many doctors, everybody dismissed dumping syndrom because I didn't have any surgery on my stomach. Every doctor will tell me that he doesn't know what is wrong with me. They thing that I have something rare and we just need to look for it. It means more blood work and special test, but the results are always negative. How can I stop this? I'm feeling worse every day.

Does anybody know what kind of tests I need to have to prove to my doctors that I have dumping syndrom?

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burdee Enthusiast

Today I tryed to skipp Nexium. All day my mouth is burning. I need to eat something to calm it down, but soon I eat, I have dumping syndrom, even if I'm eating all day by the rules for dumping diet. I feel like going in cirles. If I try to cure one thing, I will damage another. What should I do?

I saw many doctors, everybody dismissed dumping syndrom because I didn't have any surgery on my stomach. Every doctor will tell me that he doesn't know what is wrong with me. They thing that I have something rare and we just need to look for it. It means more blood work and special test, but the results are always negative. How can I stop this? I'm feeling worse every day.

Does anybody know what kind of tests I need to have to prove to my doctors that I have dumping syndrom?

Did a doctor diagnose you with 'dumping syndrome? If so, ask him/her to prove that you have that diagnosis with tests, rather than just his opinion.

Meanwhile consider which foods and/or drugs cause your acid reflux and discontinue those. (See my previous post.) Your stomach acid level may be so low after years of Nexium that you don't digest food very low. So you may need supplemental betaine hydrochloride. However, you need a Heidelberg Capsule Test to determine how much stomach acid your body produces and whether you can tolerate supplement HCl.

You might try drinking (before a meal) a tablespoon of apple cider vinegar dissolved in 1/4 cup of water. If that improves your digestion and decreases reflux, you may want to find a doc who administers the Heidelberg capsule test.

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Simona19 Collaborator

Did a doctor diagnose you with 'dumping syndrome? If so, ask him/her to prove that you have that diagnosis with tests, rather than just his opinion.

Meanwhile consider which foods and/or drugs cause your acid reflux and discontinue those. (See my previous post.) Your stomach acid level may be so low after years of Nexium that you don't digest food very low. So you may need supplemental betaine hydrochloride. However, you need a Heidelberg Capsule Test to determine how much stomach acid your body produces and whether you can tolerate supplement HCl.

You might try drinking (before a meal) a tablespoon of apple cider vinegar dissolved in 1/4 cup of water. If that improves your digestion and decreases reflux, you may want to find a doc who administers the Heidelberg capsule test.

In May of last year I saw a Gastroenterologist. I had Gastritis and pain on left side of my stomach around pancreas. He did the upper endoscopy and one week later colonoscopy. They found only MarshI, beginning of celiac disease - by accident, mild gastritis and mild reflux. Before that I went to Emergency room where doctor elevated Nexium from 20mg to 40mg. I was on it for 3 weaks before endoscopy. I was also not able to eat or drink anything. I didn't felt any hunger, I had nausea. I just drank water and ate some plain rice or chicken broth (only few spoons). After colonoscopy I saw him again and complained more about mine dizziness and fainting after food. He told me that I might have dumping syndrom. He send me a diet for people with stomach surgery, but I wasn't able to fallow it. It had milk, cottage chese, yogurt included in every time of day. I was milk intolerant and later, in July I found out that I have real casein allergy. This doctor told me that I don't have celiac disease and I should eat flour.

Later I saw another gastroenterologist. He ordered blood work for celiac disease and pancreatic enzymes. I was very strictly on casein and gluten free diet, plus no sugar or fat- nothing. Everything came back negative. The first gastoenterologist also ordered blod work for celiac disease. It was negative. I was also on gluten free diet. I stopped eating gluten after my endoscopy results came back. This second doctor told me to eat everything and see him in one month. I looked at him with disbelieve. he didn't give me nothing, not even advice. He thougth that I will do what? I will get better on my own? :(:angry: Later I found out that both doctors ordered only partial blood work for celiac disease- first only ttg and second antibodies IgA and IgG. Second time I was already 3-4 months on gluten free diet. The doctor at the celiac center ordered all test for celiac disease, but I was 5 month on gluten free diet.

Then I saw my other doctor, endocrinologist and internist. He also mentioned the dumping syndrom, but dismissed because I didn't had any surgery.

I also saw the doctor at the celiac clinic in New York and she told me to see neurologist. I saw a neurologist. I also had many tests and again everything came back negative. I mentioned Nexium to every doctor, but they dismissed same way as dumping syndrom.

All symptoms what I have fit the symptoms of dumping syndrom. They are:

Nausea

Abdominal pain, cramps

Dizziness, lightheadedness

Bloating,

Fatigue

Heart palpitations, rapid heart rate

And later, usually one to three hours after eating:

Weakness, fatigue

Dizziness, lightheadedness

Shakiness

nervousness

Heart palpitations, rapid heart rate

Fainting episodes

Low blood pressure

Black outs when changing position

Low blood sugar and high blood sugar when eating something sweet, but I don't have diabetis.

I also have with each episod back numbness in middle of my back with the pain shuting in one side or other- more on right than on left. I feel like I had a few drinks, or when is very bad like I took three sleaping pils.

I don't know what is wrong with me the same way as my doctors. You gave me a very good advices today. I hope that I will find doctor who will finaly tell me what is vrong with me. Any other suggestions?

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burdee Enthusiast

All your 'dumping syndrome' symptoms are common with celiac disease. If your doc said you had 'beginning celiac', you should abstain from all gluten now. Having 'beginning celiac' is like being mildly pregnant. Either you are or you aren't. I suspect completely abstaining from gluten will decrease many of your symptoms.

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Simona19 Collaborator

All your 'dumping syndrome' symptoms are common with celiac disease. If your doc said you had 'beginning celiac', you should abstain from all gluten now. Having 'beginning celiac' is like being mildly pregnant. Either you are or you aren't. I suspect completely abstaining from gluten will decrease many of your symptoms.

I'm gluten free already for 11 months and casein free for 10 and half. I ate or had everything gluten free like chicken breast, beef or pork, potato, rice, vegetable, some fruit - berries and a half of orange, Chex or Panda cereal with Westsoy rice beverage, sometimes 1/2 chocolate -Gluten-free Casein-free, Glutino pretzels, Udi's bread, Earth wise butter, Vegan Rice cheese (ones per 3 months), gluten-free pasta ones per 2-3 months, Shars bread stick or crackers, lays potato chips, Amy's gluten free and casein free meals- only 3 types, Pamela's cake or Bob's flour for making bread - I will make potato pasta or empanadas, or I will make home made cake from it, or So delicious ice cream and yogurt, tofu and chocolate soy pudding... I checked my medicines. Currently I'm on Nexium 40 mg, Alavert 10 mg, Mag-o-nite (magnesium supplement), Nature Made multivitamin with Iron, Creon - pancreatic enzymes and Vitamin D 2000 mg from Nature Bounty. Also every month in time of my period I will take Tylenol rapid release (red, silver and blue pill).

I would like to feel better on this very strict diet. :(

I read many articles about celiac disease and read many posts here. I got it. I know that I need to stay a way from gluten even if I had only MarshI (They took only one sample because they were not looking for it. They took 5 samples, but only one from intestines, rest was from stomach)I never saw my "perfect" gastroenterologists again.

I was thinking that what I have is something like nerve damage to duodeum in stomach, or low acid caused from Nexium which can make problem with digestion of sugar, meat and fat (which I have) or beginning of diabetis (but always normal on regular blood work), or autonomic neuropathy caused by gluten or some rare disease or blood disorder, or something wrong with pituary gland or hypotalamus. I was 19 year old and I had encephalopaty - brain edema( corticosteroids helped to reduce swelling) and double vision). My neurologist sent me to see a neuro opthamologist. He need to check for edema, and if he will see some change the neurologist would like me to have a spinal tap (I don't want to do that).

Or all my hormones and enzymes are inbalance. Something is messing them up. I don't know what.

Thank you so much for your replies. I will check your suggestions.

P.S: I wasn't able to stay a way from Nexium. The burning in my throat was horrible. I took Nexium 40mg at 7:30 Pm. Now is 11:00pm and everything is finaly normal - no more pain. :)

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cassP Contributor

1st off- you said your MOUTH was burning???? ive never felt that ever- that sounds pretty serious- how is that possible?? i mean i know acid can even affect the sinuses- but i have never heard of a mouth burning? that's something i have no expertise in- i hope you get to the bottom of that-

yes- taking nexium everyday for years could cause all kinds of digestion problems- it could very well have cause the pain near your pancreas. food needs to be properly digested by the stomach as it should before it continues down, and if the stomach cant work right- it can cause a cascade of problems the rest of the alimentary canal.

and i know we are all very different- and all the foods u eat may be completely ok for you... but all i know is for me: i avoid soy and potatoes.. and i keep my gluten free substitues to a minimum. i also dont do corn- doesnt Udi's use a lot of corn? idk- i know their bagels are full of corn. and potato chips turn my stomach- or the corn or soy oil?? whatever it is- consuming them makes me acidic & nauseaus.

ok, good luck- sounds like u have a lot to deal with. i had an ulcer once- and i could not get comfortable. have u tested for H.Pylori or anything?? have u had and endoscopy to make sure your esophagus is okay?

have u looked into DGL?

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ravenwoodglass Mentor

If you want to stop the Nexium you will need to taper off it. Asking your doctor for a lower dose pill is the first step, go to that and then after a bit ask for an even lower dose.

You are consuming soy in some of your foods. You may want to drop it for a bit and see if that helps. It isn't unusual for us to have an intolerance to soy.

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Simona19 Collaborator

1st off- you said your MOUTH was burning???? ive never felt that ever- that sounds pretty serious- how is that possible?? i mean i know acid can even affect the sinuses- but i have never heard of a mouth burning? that's something i have no expertise in- i hope you get to the bottom of that-

yes- taking nexium everyday for years could cause all kinds of digestion problems- it could very well have cause the pain near your pancreas. food needs to be properly digested by the stomach as it should before it continues down, and if the stomach cant work right- it can cause a cascade of problems the rest of the alimentary canal.

and i know we are all very different- and all the foods u eat may be completely ok for you... but all i know is for me: i avoid soy and potatoes.. and i keep my gluten free substitues to a minimum. i also dont do corn- doesnt Udi's use a lot of corn? idk- i know their bagels are full of corn. and potato chips turn my stomach- or the corn or soy oil?? whatever it is- consuming them makes me acidic & nauseaus.

ok, good luck- sounds like u have a lot to deal with. i had an ulcer once- and i could not get comfortable. have u tested for H.Pylori or anything?? have u had and endoscopy to make sure your esophagus is okay?

have u looked into DGL?

1. My mouth will burn - explanation. When I eat anything - cereal with milk, berries, breath (even regular before), meat, fish, anything, I will have burning sensation in my throat. I never experienced the real hearth burn (only one time when I had brain edema and was forced to drink 37 pills a day- doctors gave me some gel to calmed down). I have this:

Open Original Shared Link

2. The doctors tested me for H. pylori three times- negative just last year and before too. My husband had it ones and a doctor checked me too.

3. I don't have ulcer. I had endoscopy in May of last year - result:

a, Duodenum, biopsy; Small bowel mucosa with focal epithelial infiltration by lyphocytes (>40 lymphocytes/100 enterocytes). The villous architecture is preserved. No crypt hyperplasia identified. The findings are nonspecific and are associated with early celiac disease (MarshI). Correlation with clinical findings and serology is suggested.

b, Antrum, biopsy:Mild chronic gastritis. Giemsa stain for H.pylori is negative. No intestinal metaplasia identified. Alcian blue stain for intestinal type mucin is negative.

c, Fun.us, biopsy: Mild chronic gastitis. Giemsa stain for H.pylori is negative. No intestinal metaplasia identified. Alcian blue stain for intestinal type mucin is negative.

d, EG junction, biopsy: Gastroesophageal mucosa with moderate chronic inflamation. No intestinal metaplasia identified. Alcian blue stain foe intestinal-type mucin is negative. Giemsa stain foe H. pylori is negative.

e, Esophagus, biopsy: Squamous mucosa without sifnificant changes. No intestinal metaplasia identified. Alcian blue stain foe intestinal-type mucin is negative. Giemsa stain foe H.pylori is negative.

My doctor checked for H. pylori 3 monts before - stool test and later with blood work. There was nothing wrong with esophagus that I now, but I don't even know, if my doctor even knew that I had this problem before. He thought that I have only gastritis and after few weeks I would be ok. Later, month after, he asked me why I'm on Nexium. He wanted me to get of. I tried, but I had problems with burning and choking over night+ bad asthma. Only then I told him what I have and he told me to stay on it. After he told me that MarshI is nothing and that I should eat flour, I never saw him again.

4. I also had upper GI air contrast of small intestines on Jun 25. 2010:

The esophagus distends normally and demonstrates normal mucosal pattern. No evidence of abnormal structure or mass in the esophagus. No refluc occured during examination. The stomach is unremarkable. Duodenal bulb and sweep ar. within normal limiths. There was very rapid transit of oral contrast through the small bowel with radiographic contrast demonstrable in the colon within 15 minutes. Most of the small bowel loops in fact were unopacified due to the rapid transit of contrast and difficult to evaluate. There was suggestion of more numorous folds in the ileum pessibly related to malabsorptive disorder such as sprue. The terminal ileum was within normal limits. Impresion: 1.Unremarkable esophagus and stomach. Very rapid transit of contrast through the small bowel with transit time of less thatn 15 minutes. It is actually difficult to evaluate the small bowel loops as most of the contrast was present in the colon. Suggestion of a jejunal signature in the ileal loops. No gross foeld thickening. Findings may represent a malabsorptive disorder such as sprue.

4. Currently I don't have refil on my Nexium. Pharmacy gave me only two pills which I used three days ago. My doctor was on vacation and the other doctor didn't send the refil to pharmacy yet. Yesterday I tried not to use it, but by evening I was asking a pharmacist to give one more pill. I got it and later the burning sensation had stopped. Today I ate only one little box of blackberries so far. It's one hour later and I feel dizzy (like I had one drink) again. I don't know what to eat. I'm even scared to eat. Everything is making me sick, or I need to cut out from my diet + allergy to nuts, kiwi, honey, milk-casein and food intolerancies, + avoidance of food for GERD. So far only rice is ok for me to eat (with dumping syndrom is not).

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Simona19 Collaborator

If you want to stop the Nexium you will need to taper off it. Asking your doctor for a lower dose pill is the first step, go to that and then after a bit ask for an even lower dose.

You are consuming soy in some of your foods. You may want to drop it for a bit and see if that helps. It isn't unusual for us to have an intolerance to soy.

I saw my allergologist and she checked me for milk, wheat, soy, corn, eggs and fish. I reacted only to milk and wheat- delayed.

There are days that I don't eat nothing with soy. Maybe 1-2 times per week.

I will try to avoid it from now on.

I asked my doctor today to lower dose. He will give me 20 mg instead 40 mg. There isn't lower dose. I will try it for few days, if I would be ok, i will keep it.

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Simona19 Collaborator

have u looked into DGL?

What is DGL?

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burdee Enthusiast

Consuming other undiagnosed allergens (casein, soy, etc.) can also cause reflux. However blood tests (like ELISA) are more accurate for diagnosing delayed reaction (IgG or IgA) mediated allergies. Scratch tests are only effective for allergies which cause skin reactions and/or to rule out anaphylactic (IgE mediated) allergies.

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Simona19 Collaborator

Consuming other undiagnosed allergens (casein, soy, etc.) can also cause reflux. However blood tests (like ELISA) are more accurate for diagnosing delayed reaction (IgG or IgA) mediated allergies. Scratch tests are only effective for allergies which cause skin reactions and/or to rule out anaphylactic (IgE mediated) allergies.

Who can order ELISA test for soy, maybe corn and eggs? Which doctor?

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burdee Enthusiast

Who can order ELISA test for soy, maybe corn and eggs? Which doctor?

ELISA offers a 100 food panel which includes the foods you mentioned. Since most people don't know their allergies, ELISA tests 100 commonly eaten foods. Although I suspected gluten, dairy and soy (which were diagnosed by Enterolab stool tests), I never suspected cane sugar, eggs, vanilla and nutmeg. The last 2 were diagnosed by ELISA herb/spice panel. BTW most food allergies are delayed reaction allergies. However, the anaphylactic, immediate reaction (IgE mediated) allergies make the news more often. So many people and most allergy docs believe that only IgE mediated allergies are 'true allergies'. However IgG and IgA mediated reactions are still immune reaction 'allergies'.

Many naturopaths can order the ELISA panels. I don't know many mainstream docs who will do more than refer you to allergy specialists who use skin prick tests (which don't diagnose most food allergies).

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Kim69 Apprentice

Hi simona

You asked how can dumping syndrome be diagnosed?I had a stomach emptying test where I ate a meal and I had X-rays of my stomach every 30 mins or so showing the contents of the stomach. A graph was produced showing that I have dumping syndrome. I later realized that the new anti-depressant I had just started probably caused the result. A bit stupid of me and my Dr to have the test at that time.

Anyway, that's how you get tested for it. I wish you luck getting diagnosed. And consider fructose malabsorption. I don't think the idea has really caught on in USA yet. I am in Australia and a Coeliac disease researcher sue shepherd ( who has celiac disease herself) has really made great discoveries in this area.

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cassP Contributor

What is DGL?

Deglycyrrhizinised liquorice

it really helps your stomach- can reduce high acidity. i love it. it's better as DGL. regular licorice can elevate your blood pressure

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Simona19 Collaborator

Yesterday I saw another doctor. She told me that my problems can be associated with changes I made in my diet, with low stomach acid, lost of weight, malnutrition(I'm afraid to eat and I will skip meal because I know up front that I will have problems), pancreas insuficiency,or circulation problems.

She told me that I should stay on Nexium 20 mg and ordered dopler of veins on my neck, x-ray of spine and blood work to check for Vitamins again.

She told me to go to a clinic in any University Hospital in area and tell them my case.

She also don't know what I have. She sad that it is something rare that she and other doctors aren't familiar with. So far everything what they tested me for was negative. She also told me that I might need very specific tests and they might be done even in the presents of a doctor.

I will follow her directions. I hope that somebody would finally be able to find out what is wrong with me. I hope....

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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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