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Benefits Of The Endoscopy

suziq0805

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suziq0805 Enthusiast
suziq0805
Posted

I keep going back and forth about pursuing an endoscopy. My son recently had the genetic testing done and he is DQ8/DQ8. So I have at least a DQ8 gene. Once I discovered that I decided to go gluten-free to see if I noticed any improvements. I had the blood test and it was negative. As a teenager I frequently had bad stomach cramps. The last few years I've experienced muscle weakness/pain, some occassional numbness/tingling, dizziness, nerve pain, headaches, and after work I often felt like I was driving home in this brain fog. I've been gluten-free for a couple weeks and have noticed an improvement in headaches so far and have had less gas. My plan waas to go gluten-free for the rest of the summer and when I start working again (I'm a teacher) to see if I feel better. But then I wondered......what if I have celiac but my neurological symptoms don't improve? So now I'm debating about contacting a GI doctor to see if I could get scheduled for a scope in the next few weeks...I would begin eating gluten again. I originally thought that I'd skip the testing to avoid more medical bills (the last thing we need right now!!!) and I hate being under anesthesia, and I know that the scope isn't always completely accurate. I figured that if I tested positive then they'd tell me to go gluten-free anyway and if I had a sensitivity it wouldn't show up on the scope. I spent years in pain that would come and go (the last couple have been pretty good) and I went to so many doctors and the only thing that ended up helping was physical therapy...didn't get rid of the pain but it greatly reduced it. I don't want to go through the scope to get a negative because we don't need more medical bills and I'd feel like a crazy person just grasping for a diagnosis. I know I need to make a decision to either pursue a scope or stick with the gluten-free diet....any advice/things to consider would be greatly appreciated!

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cahill Collaborator
cahill
Posted

I keep going back and forth about pursuing an endoscopy. My son recently had the genetic testing done and he is DQ8/DQ8. So I have at least a DQ8 gene. Once I discovered that I decided to go gluten-free to see if I noticed any improvements. I had the blood test and it was negative. As a teenager I frequently had bad stomach cramps. The last few years I've experienced muscle weakness/pain, some occassional numbness/tingling, dizziness, nerve pain, headaches, and after work I often felt like I was driving home in this brain fog. I've been gluten-free for a couple weeks and have noticed an improvement in headaches so far and have had less gas. My plan waas to go gluten-free for the rest of the summer and when I start working again (I'm a teacher) to see if I feel better. But then I wondered......what if I have celiac but my neurological symptoms don't improve? So now I'm debating about contacting a GI doctor to see if I could get scheduled for a scope in the next few weeks...I would begin eating gluten again. I originally thought that I'd skip the testing to avoid more medical bills (the last thing we need right now!!!) and I hate being under anesthesia, and I know that the scope isn't always completely accurate. I figured that if I tested positive then they'd tell me to go gluten-free anyway and if I had a sensitivity it wouldn't show up on the scope. I spent years in pain that would come and go (the last couple have been pretty good) and I went to so many doctors and the only thing that ended up helping was physical therapy...didn't get rid of the pain but it greatly reduced it. I don't want to go through the scope to get a negative because we don't need more medical bills and I'd feel like a crazy person just grasping for a diagnosis. I know I need to make a decision to either pursue a scope or stick with the gluten-free diet....any advice/things to consider would be greatly appreciated!

Things to consider:

How long is it going to take you to get an appt. with your GI doc.

and how long will it take him to schedule your endoscopy.

Being gluten free even for a couple of weeks could cause a false negative.

To do a gluten challenge you need to consume the equivalent of 3 to 4 slices of bread daily for at least 3 months and even then the chances of a false negative are high .

How experienced is your GI doc with celiac's?does he know to take 8 to 10 biopsys of the small intestine?

Endoscopy was one of the simplest test I have ever had done.No prep just fasting before .

I was not under( as you would be in surgery)but because of the meds they gave me I dont remember any of the procedure.

With an endoscopy your doc can rule out other possible problems of the stomach and upper intestine .

The treatment whither gluten intolerant or celiac is the same, a gluten free diet,no prescription needed,,

Do you NEED a "official" diagnoses ??

Will an official diagnoses effect your ability to get health insurance?

Would an official diagnoses keep you from enlisting in the military (if you chose to do so)??

If your neurological symptoms do NOT improve and you have ruled out other possible causes,, then consider soy and/or nightshades as possible culprits.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

Things to consider:

How long is it going to take you to get an appt. with your GI doc.

and how long will it take him to schedule your endoscopy.

Being gluten free even for a couple of weeks could cause a false negative.

To do a gluten challenge you need to consume the equivalent of 3 to 4 slices of bread daily for at least 3 months and even then the chances of a false negative are high .

How experienced is your GI doc with celiac's?does he know to take 8 to 10 biopsys of the small intestine?

Endoscopy was one of the simplest test I have ever had done.No prep just fasting before .

I was not under( as you would be in surgery)but because of the meds they gave me I dont remember any of the procedure.

With an endoscopy your doc can rule out other possible problems of the stomach and upper intestine .

The treatment whither gluten intolerant or celiac is the same, a gluten free diet,no prescription needed,,

Do you NEED a "official" diagnoses ??

Will an official diagnoses effect your ability to get health insurance?

Would an official diagnoses keep you from enlisting in the military (if you chose to do so)??

If your neurological symptoms do NOT improve and you have ruled out other possible causes,, then consider soy and/or nightshades as possible culprits.

Good things to think about. The insurance issue is one I've considered. I've done well with sticking to the gluten-free diet so far but am seeing that it's not always easy...like when we head out on vacation or family gatherings. Since I don't have a lot of gastro symptoms I wondered if I'd see a big improvement for awhile or not. So that's why I'm now considering a biopsy- to help in knowing whether the cause of my nuerological symptoms is celiac. Anyone know if neurological symptoms tend to improve if celiac is the cause?

plumbago Experienced
plumbago
Posted

This is my take, and what I've been saying ever since I got diagnosed in May 2010.

Why not start out with blood tests (but, like others have said - you DO have to be eating gluten; waste of time if you're not)? Search this site to find out which blood tests are the best. Then, if those seem to indicate celiac, then I would recommend the endoscopy. That way, you will know for sure. This is the route I took. (I got Demerol with my endoscopy. I was still a bit under when I came out and groggily and happily asked the gastroenterologist where I could get some more of that stuff. "Jail," was his answer.) Despite his humor and general laidback-ness, what I have to remember about the MDs who perform these tests are that once they're done, they're done. Not much in the way of advice, care, and follow up from them. If you are diagnosed with Celiac, you will have to find your own team, generally it's not going to be the gastro or your general physician.

I've also been saying that there is still so much we do not know about Celiac, so I am remaining open while following the advice of not eating gluten. That's all I know to do now, but I think there's a motherlode of information out there that's yet to be tapped.

-Plumbago

suziq0805 Enthusiast
suziq0805
Posted
  • Author

This is my take, and what I've been saying ever since I got diagnosed in May 2010.

Why not start out with blood tests (but, like others have said - you DO have to be eating gluten; waste of time if you're not)? Search this site to find out which blood tests are the best. Then, if those seem to indicate celiac, then I would recommend the endoscopy. That way, you will know for sure. This is the route I took. (I got Demerol with my endoscopy. I was still a bit under when I came out and groggily and happily asked the gastroenterologist where I could get some more of that stuff. "Jail," was his answer.) Despite his humor and general laidback-ness, what I have to remember about the MDs who perform these tests are that once they're done, they're done. Not much in the way of advice, care, and follow up from them. If you are diagnosed with Celiac, you will have to find your own team, generally it's not going to be the gastro or your general physician.

I've also been saying that there is still so much we do not know about Celiac, so I am remaining open while following the advice of not eating gluten. That's all I know to do now, but I think there's a motherlode of information out there that's yet to be tapped.

-Plumbago

I did have the blood tests done already and they were all in the normal ranges.

cahill Collaborator
cahill
Posted

Anyone know if neurological symptoms tend to improve if celiac is the cause?

My symptoms are about 80% neurological with very few digestive symptoms.Honestly, I can deal with the digestive symptoms but the neurological symptoms are horrendous.

When I first went gluten free my neurological symptoms improved but it was not until l went soy and nightshade free that they totally resolved.

Now the only time I have symptoms is when I get CC (cross contamination) from a product made at shared facility.

plumbago Experienced
plumbago
Posted

I did have the blood tests done already and they were all in the normal ranges.

In that case, have them done one more time just to make sure (and be absolutely sure to be eating gluten). If they still come back in the normal range, then I would say look elsewhere for the culprit, no? Otherwise, do some reading on normal celiac readings, and how one can still have celiac disease with them. I do think there are cases. I might have read about them one of the books. Assess whether or not those instances are also applicable in your case. If you assess (guess) yes, then go ahead w/ the endoscopy. There are other benefits to having it done. They found a small hiatal hernia with me. I suspect that is fairly common.

Also, what exact neurological symptoms are people referring to?

-Plumbago

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suziq0805 Enthusiast
suziq0805
Posted
  • Author

Also, what exact neurological symptoms are people referring to?

-Plumbago

Not sure what others have experienced, but I have headaches, muscle pain/weakness in my arms, and burning sensations in my upper body, and dizziness.

mushroom Proficient
mushroom
Posted

As I understand it, the neurological symptoms are normally slower to resolve than the GI symptoms, so you have to be patient. If your neurological symptoms don't improve, then I don't think a GI would be the right doctor to consult. Most GI's know very little about the neuro side of celiac.

You obviously need to be gluten free so the benefit of having a diagnosis in your file is dubious. And the reliability of the testing is not that great. anyway.

All in all, if you are trying to avoid unnecessary medical expense, I would if I were you skip the endoscopy and stick with the diet. If at the end of the summer your neuro symptoms are not better I would think you would be better off with a neurologist than a GI

txplowgirl Enthusiast
txplowgirl
Posted

My neurological symptoms didn't start easing up until 6 months in and I had to remove soy, dary and nightshades for that to happen. Mine were tingling, burning in the extremities, brain fog, anxiety, depression and headaches.

suziq0805 Enthusiast
suziq0805
Posted
  • Author

As I understand it, the neurological symptoms are normally slower to resolve than the GI symptoms, so you have to be patient. If your neurological symptoms don't improve, then I don't think a GI would be the right doctor to consult. Most GI's know very little about the neuro side of celiac.

You obviously need to be gluten free so the benefit of having a diagnosis in your file is dubious. And the reliability of the testing is not that great. anyway.

All in all, if you are trying to avoid unnecessary medical expense, I would if I were you skip the endoscopy and stick with the diet. If at the end of the summer your neuro symptoms are not better I would think you would be better off with a neurologist than a GI

I've already been through the neurological route. I saw a local neurologist a few times and also the neurology department at Mayo Clinic. Didn't get me anywhere. I've been to neurology, physiatry, rheumatology, orthopedics and never got me anywhere. I guess I could call my neurologist and tell him about the celiac possibility and ask for his thoughts...couldn't hurt anyway.

mushroom Proficient
mushroom
Posted

I think if I were you I would hold off on any more doctor visits and just see what the diet does for you. Going gluten free is not like turning off a faucet and the water stops. You have a lot of healing to do and healing takes longer for some than others. There is a lot of hidden damage caused by gluten, so try to be patient and let the healing take place. Then you can go after what symptoms remain, if any. Sometimes we also come across other foods that we have an intolerance to during our healing journey, so you have to be on the lookout for other foods that are creating havoc for you. You will notice in many signatures that there are additional food intolerances. I hope this is not the case for you :)

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    • trents
      how much gluten do I need to eat before blood tests?

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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