Off Gluten For 1.5 Years, But Having An Endoscopy For Nausea Next Month. Dr Wants Me To Eat Gluten To Get An Actual Diagnosis, Should I?

[SafetyDancePants]

Hello all,

I used to suffer from daily severe stomach aches and nausea (for ~10 years), and through an elimination diet, I found that gluten was a big part of my issue -- it was like a light switch, no more gluten, no more stomach aches. I don't know if I am Celiac or not, but I treat it as though I am, because I react so badly to it. I don't intend on eating gluten for the rest of my life.

Although my stomach aches went away, I am still suffering from severe, chronic nausea. I never throw up, but feel as though I will many times a day. I have been trying different solutions with my naturopath (dairy elimination, heartburn/acid reflux treatments) with no luck so far, so I have just scheduled an endoscopy as a next step. When I met my GI for my consultation, he pretty strongly pushed for me to go back on gluten for a few weeks before the endoscopy, and I pretty strongly pushed back that I didn't want to.

I have been off of gluten for 1.5 years and I don't really care if I get a Celiac diagnosis or not, but I am in doubt as to whether or not I did the right thing. I don't want to go through the endoscopy process, refuse to eat wheat, and then miss something that might help deal with my nausea.

Will a positive or negative diagnosis of Celiac change anything for a person who is already 100% gluten free? Are there Celiac-related issues that could be causing my nausea, and do I have to have the diagnosis to try to treat those issues?

I'm really torn. I felt like I was doing the right thing by telling him 'no,' but I also don't want my stubbornness to get in the way of diagnosing and treating the cause of my nausea.

Can anyone offer suggestions or advise?

[Celiac Mindwarp]

Could you have the endoscopy without eating gluten?

You have a problem now, whether or not you have celiac, so maybe it would be helpful to have a look anyway. You might have had some cross contamination and not healed if there was celiac damage. You might have inflamation or a hernia or something.

If your gut ( ) reaction is not to go back to gluten and you dont need a diagnosis then perhaps you can be clear with the doctor and see what else they come up with to investigate. My hunch is that there are other routes to explore before thinking about a gluten challenge. I think some doctors see it as an 'easy' way to test. Plenty here would disagree.

Good luck, come and ask questions

[mommida]

I think it is reasonable to assume you are strictly gluten free. You probably have missed the window for a Celiac diagnoses, unless you have a rare case of Celiac which does not completely heal on a gluten free diet.

Gene testing could be used to determine if you have some of the known Celiac genes. Remember not all Celiac genes are identified and genetic testing can be inaccurate too.

There are many different things that can present with the same gut symptoms. Gluten can also be a "trigger" for Eosinophilic Esophagitus another auto immune disease. The symptoms are very similar to Celiac Disease. (In fact I thought my daughter must have been having gluten from somewhere causing the symptoms. She was diagnosed "probable Celiac" when she was 17 months old and then with EE when she was 6.)

You have enough making you sick right now to have the endoscope with biopsy. You will probably not get a Celiac diagnoses, but hopefully find out if there is another related illness.

An endoscopy with biopsy will not diagnose a gallbladder issue.

[Cara in Boston]

So your doctor wants you to eat gluten to make yourself sick so he can prove that gluten makes you sick?

After a year and half, "a few weeks" may not even be enough to cause enough damage to show up on an endoscopy. And/or, the doctor could miss the damage that may (or may not) be there. You will likely get a negative result and it WILL NOT mean you DO NOT have celiac. You will have made yourself sick for several weeks only to add confusion and doubt to your diagnosis. If you did happen to get a positive diagnosis, you will be told you need to avoid gluten - something you already know.

I personally wouldn't do it.

Cara

[mommida]

What Cara said! I will add the warning that gluten challenges can be dangerous too. My daughter was about 15 months old and the wait time for seeing the ped. gastro. was over 3 months. I took her off gluten. The doc said put her back on gluten. So after 2 weeks on gluten the blood draw was done and she had to go in the hospital on an IV for 4 days for the dehydration from the gluten challenge.

Age and overall health of a patient makes a HUGE difference, but gluten challenges for Celiacs can be very dangerous.

[Celiac Mindwarp]

I can safely say I didn't enjoy my challenge and lasted 3 weeks, too short to show up, long enough to make me ill for several months.

[MJ-S]

I agree that I wouldn't undergo a gluten challenge. No way, no how. But, will the doctor still do the endoscopy even if you stay off the gluten? It could be useful anyway, as they can look for other things (such as H Pylori) while in there.

[mushroom]

If he's going to do the endoscopy anyway, regardless of the challenge, I would just let him do his thing and not bother about the gluten challenge. At least he can look for other things that might be causing you a problem and you won't be making yourself sicker in the process. I personally don't think a three-week challenge is long enough to make a difference although it is a common-enough stated time period. So I think it is short for a challenge, but an eternity for someone who does not tolerate gluten.

[Celiac Mindwarp]

What Mushroom said

[nvsmom]

Yeah, I agree with the others that your doctor's logic is faulty. If he is doing an endoscopy to find out what is bothering you NOW (nausea), then why would he want you to eat gluten which hasn't been a factor in your life for a year and a half?? If you ate gluten, it could cause more damage and mask any other problems that are going on.... I think you are right to skip the gluten challenge. Good luck with it; I hope you find dome answers.

[SafetyDancePants]

Alright, you guys have reassured me that I am made the right move in declining it.

I am not dying to start the recovery process over, especially if 3-4 weeks of a challenge is possibly not enough time to get a positive diagnosis anyways. I also don't have huge faith in this GI, and I think a negative celiac diagnosis could lead to him treating me worse (I believe he already thinks my nausea is in my head.. he suggested that having daily nausea 'May just be what is normal for your body...' and that I may be using the wrong word for my nausea, because I never vomit... ugh). If the endoscopy comes back totally clean, I will be high-tailing it back to my naturopath, and don't intend to continue working with this guy.

He will definitely still do the endoscopy without the gluten challenge, and I am hoping it will at least rule out a few possibilities like ulcers and H. Pylori.

Thank you everyone for the advise -- I love this board!

[mommida]

Get a different doctor to do the endoscopy with biopsy. You need to know what the scope is being done to "rule out or rule in/diagnose. If this can't be discussed with you before and your concerns addressed ~This is NOT the doctor for you! Maybe it is just your "gut" feeling this is the wrong doctor. I would bet money on your being right in this case. (Sorry about the pun couldn't help it)

[pain*in*my*gut]

Get a different doctor to do the endoscopy with biopsy. You need to know what the scope is being done to "rule out or rule in/diagnose. If this can't be discussed with you before and your concerns addressed ~This is NOT the doctor for you! Maybe it is just your "gut" feeling this is the wrong doctor. I would bet money on your being right in this case. (Sorry about the pun couldn't help it)

Daily nausea could be a sign of gastroparesis. I have it. It's caused by your stomach emptying too slowly. An upper barium swallow study would give you more info on this condition than an endoscopy! I think you need a new doc!

[Lisay]

I suffered for years with many gastro issues , headaches, brain fog and most recently joint pain and inflammation. I tried a gluten free diet and within 24 hours I noticed a substantial change , stayed gluten free for 6 months and felt amazing. I had a checkup and my gastro wanted to perform a biopsy and asked me to eat gluten for 5 weeks. I did the challenge and was so sick. My blood work came back negative and so did my biopsy. I was wondering if the 6 months Gluten-Free impacted my yet results. I also get a tiny rash on my forearm and recently discovered it goes away when I go off gluten. Has anyone received a negative biopsy for Celiac but still suffer when they eat gluten?

[mushroom]

Has anyone received a negative biopsy for Celiac but still suffer when they eat gluten?

Good gracious, yes!! This board is littered with bodies bearing negative biopsies. A lot of them have negative blood work as well. It is called non-celiac gluten intolerance and it has only been in the past couple of years or so that the celiac researchers have acknowledged that such a condition exists. It used to be that a non-diagnosable gluten sufferer was sent on his/her way with instructions to eat as much gluten as they wanted. Some doctors will still tell you this, but not the hep doctors. There are actually more gluten intolerants than there are celiacs -- could be part of the reason no one can figure out why so many people are eating gluten free if only 1 in 133 is a celiac.

[Lisay]

Thank you, this is my first day on this site and I plan on reading and learning a lot. My doc wanted me to get another biopsy and I declined. All I know is that as soon as I eat gluten I get sick and I don't want to get any more tests. The past 2.5 years I had every test under the sun, was told I have IBS and even MS ...the 6 months eating gluten-free I felt like a new person. I need to listen to my body and keep gluten out of it.

[Mperkins1224]

Just a thought, I didn't read all the posts but... I've been gluten-free for at least 2 years if not more, I just tried casein free... See what happens. Same things happened to me, but the stomach aches were coming back more frequently so I decided to try it...I saw immediate results. Best of luck. Ps don't eat gluten again, it's not worth it!!! Never know what your reaction will be this time!

[Lisay]

Is casein milk ? All dairy ? Wow , is it difficult to eat gluten free and dairy free? I do really well for a while gluten free then I will have a slice of pizza or bread and within minutes I have symptoms, I need to completely eliminate it forever. I do get cramps sometimes with dairy, especially ice cream. I am excited about this site :-) thank u

[psawyer]

Is casein milk ?

Casein is the protein in cow's milk. Lactose is the sugar in it.

Most people with celiac disease have issues with lactose until their intestines heal enough that the villi can again produce the enzyme lactase, which is needed to digest lactose. They can then reintroduce dairy.

If your issue is with casein, then a completely dairy-free diet is needed. You may be able to tolerate Open Original Shared Link.

If you tolerate casein, but have trouble with lactose, some cheeses may be okay for you. The harder the cheese, and the longer it has aged, the less residual lactose in it. For example, Parmesan and old Cheddar are low in lactose. Brie and Camembert have much more lactose content.

[mushroom]

Milk is made up of milk sugars (lactose), protein (casein) and fat. Most celiacs do not tolerate milk sugars when first diagnosed because the damage to their small intestine means they cannot produce the enzyme lactase; however, they can often tolerate yogurt, hard cheese, dairy products where the lactose has been removed or predigested. Casein is digested by a different enzyme and if you are casein intolerant it means you really can't have any dairy. Those who are only lactose intolerant can normally resume dairy once their guts have healed.

Ice cream, cream and milk are very high in lactose; butter is mostly fat; cheese is casein and fat mostly. Many posters on the board are dairy and gluten free and there are plenty of recipes and threads on this.

(Posting at the same time as Peter )

[Lisay]

Thank you both ! This is extremely helpful, I will search the boards and starting today eliminate casein as well. I seem to be okay with yogurt so it makes sense now.

[designerstubble]

Hi safetydancepants (good name!!)

I am in the same predicament as you!

What have you decided?

My blood work came up positive, I was very very ill, and decided to go gluten-free. I ended up waiting for 3 months for an endoscopy so I am glad I gave up the gluten. However. My consultant doc said there was no point doing the endo until I started eating gluten again, I pushed her, and she did it. She found a hiatus hernia and scalloping of the duodenum (3-4 months after being gluten free). They pulled the endoscope out unfortunately as I was apparently naughty and started biting on it!!

She then insisted quite vehemently I had to do a challenge anyway!

Ha! What are these people on?

I have to go in March 2013. I have decided that they can stick their gluten challenge 'where the sun don't shine'...

Have the endo, see what they find. Who knows? Good luck, love to know your outcome

[SafetyDancePants]

Original Poster back to let you all know how it went:

I stuck to my guns and refused the gluten challenge. I just had my endoscopy yesterday, so I don't have my pathology results yet, but just by looking, my doctor found a hiatal hernia and an area of irritation that he believes to be caused by acid reflux. I am amazed how negative my GI is -- he told me over and over that 'daily nausea may just be what is normal for you,' and even said that after the endo and finding those issues. I've continued to tell him that I am not willing to accept that I will be sick the rest of my life (I am 25 -- I have a lot of potentially healthy years ahead of me!). I am going to get my biopsy results (looking for H. Pylori and a few other things, not celiacs since I haven't been eating wheat) within the next 2 weeks, and I am doing one further test with this GI -- a breath test that monitors how my body and bacteria in my stomach digests sugar water after a day of fasting, that is supposed to indicate some specific kind of bacteria overgrowth. After I finish those tests, I will be taking my test results and high-tailing it back to my naturopath, where we can look at options to treat these things.

I will post again once I get my pathology results, but wanted to give an update at this point. Thanks again to everyone who helped me make the right decision!