Advice About My Gasroscopy Please....

[fozbery]

Hello There

I am new to the forum and this is a brief history of me:

IBS C+D + bad bloating and constant gas/rumbling. Strong cramps worse around period. Symptoms for about 8 years that are constant.

Suffer with gastritis symptoms, high up stomach pain and acid burning sensation

Asthma

Heart palpitations

Problems with acne

Fluctuating weight

Often get very very hungry all of a sudden and have to eat or I feel weak.

History of tummy aches as a child

Always very tired and irritable, no energy

Anxiety and depression tendencies

Slightly anemic

Often achy legs

Very bad PMS

Very irregular periods - one a year at one point, now about every 3/4 months.

Polycystic ovaries

Thin hair and brittle nails

Inability to concentrate/remember

Frequent colds and tonsillitis/strep throat

I would like to know what you think about my recent gastroscopy and my symptoms.

I had a gastroscopy/endoscopy a few days ago and the doctor said the lining of my duodenum was very thin, my stomach was red and inflamed and I had abnormalities on the esophagus. She said it is possible that I may have celiacs or a bacterial infection and I will meet in one week to discuss when results are back.

Do you think my symptoms and what the doctor saw on the gastroscopy point towards celiacs disease?

Its worth mentioning that I have never had any skin rashes, only very dry, flaky red hands in winter.

Thanks for any comments, I am so desperate to find out why I am feeling so bad all the time. I am completely exhausted!!

[shopgirl]

Did she take any biopsies of your intestines? Biopsy samples need to be examined under a microscope to confirm Celiac.

[fozbery]

Did she take any biopsies of your intestines? Biopsy samples need to be examined under a microscope to confirm Celiac.

Yes she took biopsies from duodenum, intestines and esophagus. But no results yet. Im just wondering how likely it is to come back positive. I have never tried gluten free. I dont know if there is anything in it but I absolutely love bread, pasta and all things gluteny! I get strong cravings when I am hungry for bread and sometimes get really really hungry and have to eat or I feel weak.

[ravenwoodglass]

Yes she took biopsies from duodenum, intestines and esophagus. But no results yet. Im just wondering how likely it is to come back positive. I have never tried gluten free. I dont know if there is anything in it but I absolutely love bread, pasta and all things gluteny! I get strong cravings when I am hungry for bread and sometimes get really really hungry and have to eat or I feel weak.

Did you have any blood tests for celiac done? If not you might want to get them done before you go gluten free. Glad she took lots of biopsies and hopefully they will give a clear result. Since you have had the tests you can go gluten free now and your body may give you the answer before the tests are even back. For some of us gluten can be addictive so your strong cravings for it may be due to that. Don't think your never going to be able to enjoy pasta, breads etc, you will they just won't be made from gluten ingredients. It is a good idea when first on the diet to go with mostly whole unprocessed foods for a while as it will help you heal the fastest. Give the diet at least a couple of months no matter what the test results are as false negatives are not uncommon.

[shopgirl]

Yes she took biopsies from duodenum, intestines and esophagus. But no results yet. Im just wondering how likely it is to come back positive. I have never tried gluten free. I dont know if there is anything in it but I absolutely love bread, pasta and all things gluteny! I get strong cravings when I am hungry for bread and sometimes get really really hungry and have to eat or I feel weak.

You can still eat bread and pasta. I had pasta last night for dinner. Granted, it's gluten-free pasta. But it was pretty good (if I do say so myself).

I agree, give the diet a shot even if you come back negative. Celiac tests only test for Celiac

[fozbery]

Hey thanks for the replies.

I had a blood test about 8 years ago when my symptoms started and it was negative. Even though my symptoms were still persistent I was told it was not celiacs as the blood test was negative. I have since discovered this is not true, hence gastroscopy, 8 years later!! It makes me angry that many doctors knew I was suffering and that I had to wait 8 years for a gastroscopy!

I'm cutting out lactose at the moment as my dietician told me to continue with gluten until I get a diagnosis. she wants me to try just cutting out lactose first.

[ravenwoodglass]

Hey thanks for the replies.

I had a blood test about 8 years ago when my symptoms started and it was negative. Even though my symptoms were still persistent I was told it was not celiacs as the blood test was negative. I have since discovered this is not true, hence gastroscopy, 8 years later!! It makes me angry that many doctors knew I was suffering and that I had to wait 8 years for a gastroscopy!

I'm cutting out lactose at the moment as my dietician told me to continue with gluten until I get a diagnosis. she wants me to try just cutting out lactose first.

Since your still on gluten call your doctor and get the blood work done ASAP, just because the test was negative 8 years ago doesn't mean it will be now. Once the test is done then get on the diet you really don't need to wait for the results. Also since the enzyme that helps us digest dairy is located in the same area that is damaged by celiac almost all of us are lactose intolerant until we have healed. Once you get the blood tests drawn there is no reason to not try the diet as the only tests the diet will effect are the ones for celiac. Being gluten free will not mask some other disorder and since the rate of false negatives is pretty high a trial of the diet is needed no matter what the results are.

[fozbery]

Since your still on gluten call your doctor and get the blood work done ASAP, just because the test was negative 8 years ago doesn't mean it will be now. Once the test is done then get on the diet you really don't need to wait for the results. Also since the enzyme that helps us digest dairy is located in the same area that is damaged by celiac almost all of us are lactose intolerant until we have healed. Once you get the blood tests drawn there is no reason to not try the diet as the only tests the diet will effect are the ones for celiac. Being gluten free will not mask some other disorder and since the rate of false negatives is pretty high a trial of the diet is needed no matter what the results are.

Thanks so much for your helpful replies. Do you think my symptoms combined with what the doctor saw sound like celiacs? Sorry I know its hard to guess but I am so desperate to know why I feel so bad. Might sound strange but if it comes back negative I will actually be dissapointed since then its more work figuring out what is wrong with me. Last night I was dizzy and shaky, went off a bit after I ate a banana. Agh!

[ravenwoodglass]

Thanks so much for your helpful replies. Do you think my symptoms combined with what the doctor saw sound like celiacs? Sorry I know its hard to guess but I am so desperate to know why I feel so bad. Might sound strange but if it comes back negative I will actually be dissapointed since then its more work figuring out what is wrong with me. Last night I was dizzy and shaky, went off a bit after I ate a banana. Agh!

Yes you do sound like you could be one of us which is why I am urging you to try the diet no matter what the test results. In the end go by what your body is telling you once you get onto the diet.

[fozbery]

Yes you do sound like you could be one of us which is why I am urging you to try the diet no matter what the test results. In the end go by what your body is telling you once you get onto the diet.

Hi Again

Im not sure what my body is telling me really, like I mentioned I get really really strong cravings for bread etc and often feel very weak and hungry. I think I would need educating about Gluten Free food, especially breakfast options. The more I htink about my diet the more I realise how much gluten I eat, in nearly every meal!! Do amy other celiacs have such strong cravings? Maybe it would go away once I start the diet.

I cant wait for Monday when I will find out about the tests.

[ravenwoodglass]

Hi Again

Im not sure what my body is telling me really, like I mentioned I get really really strong cravings for bread etc and often feel very weak and hungry. I think I would need educating about Gluten Free food, especially breakfast options. The more I htink about my diet the more I realise how much gluten I eat, in nearly every meal!! Do amy other celiacs have such strong cravings? Maybe it would go away once I start the diet.

I cant wait for Monday when I will find out about the tests.

Strong cravings are really common. One of my children was literally addicted to pasta from his first taste and had to have it for dinner every night. I also had bread cravings and would even with stuff like breaded chicken eat the breading but leave the chicken or sit and eat a whole loaf of italian bread in one sitting.

Yes the cravings do diminish but we do sometimes go through withdrawl so don't be surprised if you are a bit moody when you do the trial of the diet. It will pass.

Some ideas for breakfast are Chex cereals, they are marked gluten-free, fruit and an egg, pnut butter toast on gluten-free bread, bacon and eggs or sausage and eggs, left over gluten-free pizza from the night before, yogurt, gluten-free granola (avoid the ones with oats in the beginning) if your on the run a bag with a mix of gluten-free nuts, dried fruits, gluten-free pretzels and chocolate chips is nice.

[fozbery]

Thanks. It's strange today I had tummy ache and was so hungry , all I wanted was toast. After I ate it I quickly feel better (might sound strange that I feel better at first?!) and was satisfied. But an hour later I feel bad again and the symptoms came back worse(mainly cramps and frequent toilet trips).

[ravenwoodglass]

Thanks. It's strange today I had tummy ache and was so hungry , all I wanted was toast. After I ate it I quickly feel better (might sound strange that I feel better at first?!) and was satisfied. But an hour later I feel bad again and the symptoms came back worse(mainly cramps and frequent toilet trips).

Have you had the blood test yet? If you have had all the testing for celiac your going to have you can go ahead and start the diet. You don't have to wait for the results. If you do wait for the results be sure to give the diet a try even if they are negative.

[fozbery]

I had the blood test about 6 and a half years ago and it was negative. I am seeing the doctor on Monday so will decide then if I should try the diet. My dietician wants me to try lactose free first which I have done for about ten days. I do feel slightly better but had a lot of headaches and nausea at first. Not sure why.

[mushroom]

Your negative blood test six years ago is no indication of what your results would be if you had it now. Antibodies build up over time and six years is a long time to be building up Please have it run again before your go gluten free.

[fozbery]

Thank you all for your advice I really appreciate it. Its driving me crazy waiting to find out my results and not knowing what to do in the mean time. They are also testing me for bacterial infections which would also make sense with my symptoms. I'm praying I don't get my usual diagnosis of ibs and sent on my way!!

[fozbery]

Thank you all for your advice I really appreciate it. Its driving me crazy waiting to find out my results and not knowing what to do in the mean time. They are also testing me for bacterial infections which would also make sense with my symptoms. I'm praying I don't get my usual diagnosis of ibs and sent on my way!!

Hi again

Just got my results and all biopsies and blood tests were negative for Celiacs.

Thanks for all your advice and help. I now have something new to worry about. An elevated level of calprotectin in the stool. I now have to have a colonoscopy and I am pretty scared. I know this is no longer celiac related but does anyone know possible causes for this? I have been told it could possibly be crohns disease. I am a bit scared!

[ravenwoodglass]

Hi again

Just got my results and all biopsies and blood tests were negative for Celiacs.

Thanks for all your advice and help. I now have something new to worry about. An elevated level of calprotectin in the stool. I now have to have a colonoscopy and I am pretty scared. I know this is no longer celiac related but does anyone know possible causes for this? I have been told it could possibly be crohns disease. I am a bit scared!

Now that you are done testing try the diet even though results were negative. Since false negatives are not uncommon it is advised to try the diet no matter what the test results. Since Calprotectin seems to be a marker for inflammation you have nothing to lose by trying the diet. Could you have other issues, yes but the diet will not effect the testing for those other issues.

The calprotectin can also at times be elevated in untreated celiac disease.

Open Original Shared Link

"It was found that FC concentration is increased in childhood celiac disease, related to the severity of histopathologic findings and responsive to GFD"

[fozbery]

Now that you are done testing try the diet even though results were negative. Since false negatives are not uncommon it is advised to try the diet no matter what the test results. Since Calprotectin seems to be a marker for inflammation you have nothing to lose by trying the diet. Could you have other issues, yes but the diet will not effect the testing for those other issues.

The calprotectin can also at times be elevated in untreated celiac disease.

Open Original Shared Link

"It was found that FC concentration is increased in childhood celiac disease, related to the severity of histopathologic findings and responsive to GFD"

Thanks. My gastro doc has said that I clearly do not have Celiacs so I presume all vili were fine. Forgive my ignorance but I dont see the point in trying the diet if the doctor has told me I clearly dont have a problem. There seem to be so many restrictions in my diet at the minute because of my IBS symptoms. I cant eat high fiber, anything to rich or heavy sauces and dressings. Dont know if I should cut another food group out! I was tested for lactose intolerance and they said thats fine. She said something like I needed mutations on both genes and I only had it on one. Dont know if I remembered that right.

I am most worried about the claprotectin thing!

[ravenwoodglass]

Thanks. My gastro doc has said that I clearly do not have Celiacs so I presume all vili were fine. Forgive my ignorance but I dont see the point in trying the diet if the doctor has told me I clearly dont have a problem. There seem to be so many restrictions in my diet at the minute because of my IBS symptoms. I cant eat high fiber, anything to rich or heavy sauces and dressings. Dont know if I should cut another food group out! I was tested for lactose intolerance and they said thats fine. She said something like I needed mutations on both genes and I only had it on one. Dont know if I remembered that right.

I am most worried about the claprotectin thing!

The point in trying the diet anyway is the high rate of false negatives. I was told for years that celiac was not my problem and was close to death by the time doctors finally realized that was what I had. It is up to you of course whether you want to give it a try or not but you have nothing to lose by doing so and possibly have you health to gain.

[fozbery]

The point in trying the diet anyway is the high rate of false negatives. I was told for years that celiac was not my problem and was close to death by the time doctors finally realized that was what I had. It is up to you of course whether you want to give it a try or not but you have nothing to lose by doing so and possibly have you health to gain.

Hello again

I thought I would update you on my situation. Also because I am getting even more confused.

My gastroscopy was normal except for reddened inflamed stomach lining and thin duodenum.

All tests for celiacs negative.

Stool test showed very high level of intestinal inflammation.

Back from my colonoscopy yesterday and even though my stool showed a high level of inflammation she said my colon was completely normal except for a lot of lymphatic tissue on the ileum.

Now I am really confused as to why I would have extra lymphatic tissue on ileum. She said it is sometimes found in very young patients and people with very high immune systems but I am 28 and consider my immune system to be much lower than all my friends. I constantly catch colds etc.

I also wanted to mention that for about three weeks I decided to try to gluten free diet. At first I didnt feel great, but after a week I started to feel OK again, still not great or completely better but OK. Still quite crampy but mostly diarrhea free, not so bloated. Then I reintroduced it after three weeks and I noticed and instant difference. Really bad cramps, lots of gas and diarrhea. Maybe even worse than before I tried the diet.

Help I am sooo confused!!!

Could a gluten intolerance cause extra lymphatic tissue on ileum? As this seems to be a similar sort of 'immune response' thing.

Any knowledge greatly received.

I think I may go back on the diet.

[ravenwoodglass]

Now I am really confused as to why I would have extra lymphatic tissue on ileum. She said it is sometimes found in very young patients and people with very high immune systems but I am 28 and consider my immune system to be much lower than all my friends. I constantly catch colds etc.

I also wanted to mention that for about three weeks I decided to try to gluten free diet. At first I didnt feel great, but after a week I started to feel OK again, still not great or completely better but OK. Still quite crampy but mostly diarrhea free, not so bloated. Then I reintroduced it after three weeks and I noticed and instant difference. Really bad cramps, lots of gas and diarrhea. Maybe even worse than before I tried the diet.

Help I am sooo confused!!!

Could a gluten intolerance cause extra lymphatic tissue on ileum? As this seems to be a similar sort of 'immune response' thing.

Any knowledge greatly received.

I think I may go back on the diet.

I think going back on the diet is the way to go. What you did was a gluten challenge when you reintroduced gluten and your body made it clear that it would rather you were gluten free.

If your body is fighting gluten all the time it doesn't have much left in reserves to fight off colds and viruses. I was also sick all the time before I went gluten free, now I haven't even had a cold in so long I can't remember when the last one was.

Your biopsies could have been a false negative for a number of reasons. One of the most common being that the damage is patchy and a damaged area was not biopsied or was out of reach of the scope. You have 22 ft of small intestine and the scope can only go just so far.

I do hope you will go back on the diet as it sounds like it was working for you and sometimes we have to trust our bodies reaction rather than tests that have a high rate of false negatives.

[fozbery]

I think going back on the diet is the way to go. What you did was a gluten challenge when you reintroduced gluten and your body made it clear that it would rather you were gluten free.

If your body is fighting gluten all the time it doesn't have much left in reserves to fight off colds and viruses. I was also sick all the time before I went gluten free, now I haven't even had a cold in so long I can't remember when the last one was.

Your biopsies could have been a false negative for a number of reasons. One of the most common being that the damage is patchy and a damaged area was not biopsied or was out of reach of the scope. You have 22 ft of small intestine and the scope can only go just so far.

I do hope you will go back on the diet as it sounds like it was working for you and sometimes we have to trust our bodies reaction rather than tests that have a high rate of false negatives.

I did raise celiacs again with my GI doc but she said Celiacs would be unlikely because of negative blood test as well as negative biopsies.

So I feel kind of stupid for thinking about trying the diet again.

She is about to diagnose IBS :-(

[Roda]

I did raise celiacs again with my GI doc but she said Celiacs would be unlikely because of negative blood test as well as negative biopsies.

So I feel kind of stupid for thinking about trying the diet again.

She is about to diagnose IBS :-(

You will find a lot of people on here that do not believe that IBS is a diagnosis. I, and others feel it is a symptom and that they lable this when they fail to find out what is causing the "irratible bowel". Sure you do have an irratible bowel and your symptoms are real because something is making them that way! I'm with Raven, give the diet a good try, sounds like you had some positivives on it. Something caused that imflammation in your bowel. As for the negative biopsy, your doctor may not have taken enough samples, your damage could be in a part of the small bowel the scope doesn't reach, the pathologist reading the samples was inexperienced, or you just haven't gotten to the stage that you had villous damage. Or you could be non celiac gluten intolerent and diet is the best diagnostic test for that. If you touch a hot stove and get burned you learn not to touch it again. If something makes you sick when you eat it, don't eat it. Here is to future good health. Best of luck to you in whatever you decide.

[mushroom]

I second Raven and Roda. Celiac disease is not the beginning and end of gluten intolerance. Researchers are confirming what we have known all along, and doctors are finally starting to recognize, that there is such a thing as non-celiac gluten intolerance which requires you to avoid gluten just as strictly as a celiac does. Hence the reason we recommend that everyone who tests negative give the diet a three-month trial anyway, because so often it is the answer to your problems despite no celiac diagnosis. You don't need a doctor's prescription or permission to eat gluten free.