Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gi Dr. Making Me Eat Gluten


dksart

Recommended Posts

dksart Apprentice

Today was my first visit w/ the new GI Dr. and he is making me eat gluten! I have to go back Monday for a load of blood tests and an ultrasound. He said even though I've been Gluten-free for over four years, five days eating gluten would be enough for the antibodies to show up in the test.

Does anyone agree? At all? Been through it? I am so nervous and just afraid to do that to myself. I am dreading the pain.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



JillianLindsay Enthusiast

If you care to share more, perhaps you could explain what the DR is looking for? If he wants to diagnose celiac disease you would have to eat gluten for at least 3 months (my GI doc says 6 months). If you've been gluten-free and happy & healthy then IMHO there's no reason to put yourself through that. If there's another problem they're looking into, I wonder why it is necessary for you to change your diet, as that would be another confounding factor. I'm not a DR of course, so there are a lot of things that could come into play that I don't know about. Perhaps talk to your DR again and this time ask more questions so you feel comfortable with this decision, or perhaps (if you so choose) you can tell your doc "thanks but no thanks". Either way, good luck & good health!

Jillian

Today was my first visit w/ the new GI Dr. and he is making me eat gluten! I have to go back Monday for a load of blood tests and an ultrasound. He said even though I've been Gluten-free for over four years, five days eating gluten would be enough for the antibodies to show up in the test.

Does anyone agree? At all? Been through it? I am so nervous and just afraid to do that to myself. I am dreading the pain.

mushroom Proficient

I agree with the previous poster. Five days of eating gluten is sure enough to make you sick, but nowhere near enough to develop enough antibodies for the celiac blood test or do enough damage for positive biopsy. If there is some other reason, you should find out what it is, but if celiac testing is the reason he is wasting your time and causing you harm to boot for no reason. What is the purpose of the ultrasound? I think you need to ask him some more questions before you agree to do this.

tarnalberry Community Regular

No, five days is not enough.

TrillumHunter Enthusiast

He can't make you eat gluten. He can't.

Ask him why he wants you to eat it. If it's only to test for celiac, then five days isn't near enough. You get to decide to keep eating gluten longer and take the test, or find a new doctor.

He works for you. It's his responsibility to help you understand.

lovegrov Collaborator

Find a different GI. This guy sounds like a disaster.

richard

dksart Apprentice

The ultrasound is to check my gall bladder etc. for other possible problems.

He said I had to eat gluten so the antibodies would show up on the blood test. I told him that I thought, since I've been Gluten-free since late 2005, the test would be negative anyway. He said those gluten antibodies are strong, they stick around even if you eat gluten free, but eating it for a few days would be better.

There's going to be lots of other tests, to rule out other auto-immune issues plus, next month an upper and lower GI and colonoscopy plus biopsies if necessary.

I ate a Chick-fil-A sandwich this evening. It's no where near as good as I remember, probably because my brain equates it as Draino. Now I am sick, sick, sick. Everything hurts so bad. Cramping, bloating, GAS, ugh! And my joints are all swollen, red and painful. I am scared to see what shape I'll be in in the morning...I know I will hardly be able to stand.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



JillianLindsay Enthusiast

I agree with Richard. Either get this guy you explain himself to you or find a new GI. I'm sorry you're having to go through this!

The ultrasound is to check my gall bladder etc. for other possible problems.

He said I had to eat gluten so the antibodies would show up on the blood test. I told him that I thought, since I've been Gluten-free since late 2005, the test would be negative anyway. He said those gluten antibodies are strong, they stick around even if you eat gluten free, but eating it for a few days would be better.

There's going to be lots of other tests, to rule out other auto-immune issues plus, next month an upper and lower GI and colonoscopy plus biopsies if necessary.

I ate a Chick-fil-A sandwich this evening. It's no where near as good as I remember, probably because my brain equates it as Draino. Now I am sick, sick, sick. Everything hurts so bad. Cramping, bloating, GAS, ugh! And my joints are all swollen, red and painful. I am scared to see what shape I'll be in in the morning...I know I will hardly be able to stand.

Ahorsesoul Enthusiast

I refuse to do this to my body. If a doctor told me I had to do this I'd tell him I would if he ate a box of ex-lax everyday I ate gluten.

dksart Apprentice

I can hardly type. Still in bed, feet hurt to touch the floor. Swollen, painful, tender joints, headache, brain fog, plus nausea, bloating and gas, but no D yet. That part I don't understand except that I was already constipated the last few days so maybe there is a dam holding back the 'flood'. Sorry if that was too graphic. I'm miserable.

If anyone out there ever thinks of cheating... nothing tastes that good.

jerseyangel Proficient

You poor thing. Your doctor is dead wrong if he thinks antibodies will show up after 5 days. The rest of the testing, I would still do since a couple things showed up on my ultrasound and at my endoscopy that are good to know.

As for the "gluten challenge"--I would stop it immediately. I'm so sorry you're so ill :(

rueyn Apprentice

I can hardly type. Still in bed, feet hurt to touch the floor. Swollen, painful, tender joints, headache, brain fog, plus nausea, bloating and gas, but no D yet. That part I don't understand except that I was already constipated the last few days so maybe there is a dam holding back the 'flood'. Sorry if that was too graphic. I'm miserable.

If anyone out there ever thinks of cheating... nothing tastes that good.

Went through this with my GI doc, too. I'd only been gluten-free for two weeks, then was told to go back on. I lasted 3 days before I told him "no more". The blood tests did NOT come back showing gluten antibodies, and even the GI said I would have had to been eating gluten for at least a month.

Take care of yourself. I know it sucks :(

TSC1 Newbie

I certainly agree with all the others here and am not a doctor, but this doctor may be good for your gall bladder, but not Celiac disease. First, when I did go to a doctor I was wheat, barley and rye free for about three years and my tests were negative. Therefore, he stated if you ate those at one time and they made you sick and I told him the symptoms gas, exttreme bloating and runs, fatigue, anemia, also moodiness, depression and irritability, he stated that was enough to continue avoiding those items. My concern and yours should be too, is if there has been some damage to your GI tract and this should be his too. it can be examined with the use of a miniature camera under local anesthetic I had gone to a nutritionist and she suggesyted L-Glutamine and I know it sounds like gluten, but it is not. It is an amino acid that has been found to rebuild and repair intestinal walls. I would like to hear from others too.

Ahorsesoul Enthusiast

I can hardly type. Still in bed, feet hurt to touch the floor. Swollen, painful, tender joints, headache, brain fog, plus nausea, bloating and gas, but no D yet. That part I don't understand except that I was already constipated the last few days so maybe there is a dam holding back the 'flood'. Sorry if that was too graphic. I'm miserable. If anyone out there ever thinks of cheating... nothing tastes that good.

Call this doctors office and let him know your symptoms. He needs to know what he is doing to you.

I love your statement about cheating. So true.

mysecretcurse Contributor

lol doctors... this is why I don't go to them. Well, one of the many reasons why. Why do you need testing for what you already know? I never had testing and never will. Don't need it. If a doctor told me to eat gluten I'd tell him to eat glass. Pretty much the same thing.

dksart Apprentice

I went to my GP today and he gave me shots of Toridol(anti-inflam) and Depomedrol(steroid) that have helped alleviate much of the pain. I am still SO constipated and have terrible twisting pains in my gut. My belly is very distended, I look pregnant. The Dr. told me to take Gas-X and Miralax. **Anyone know the Gluten-free status on these meds?**

The tests are supposed to help rule out some other auto-immune stuff he thinks it may be. In the past year I've been developing new food intolerances. First was dairy, then red meat, potatoes, and now I think soy is starting to hurt me. Also been suffering with unexplained sharp pains in my gut that wake me up. Plus I've lost about 60-70 lbs (which I needed to do anyway) since last year.

My husband brought me to the best pastry shop in town today so I could have a farewell to gluten treat, but nothing looked appetizing, nothing. I went in thinking of a croissant, she had almond croissants, which is what I wound up with. Terrible. It tasted terrible. He got an eclair, it tasted rotten. I keep trying to find the bright side...I just can not convince my brain that this food is anything but Draino. One more day left.

ravenwoodglass Mentor

I went to my GP today and he gave me shots of Toridol(anti-inflam) and Depomedrol(steroid) that have helped alleviate much of the pain. I am still SO constipated and have terrible twisting pains in my gut. My belly is very distended, I look pregnant. The Dr. told me to take Gas-X and Miralax. **Anyone know the Gluten-free status on these meds?**

The tests are supposed to help rule out some other auto-immune stuff he thinks it may be. In the past year I've been developing new food intolerances. First was dairy, then red meat, potatoes, and now I think soy is starting to hurt me. Also been suffering with unexplained sharp pains in my gut that wake me up. Plus I've lost about 60-70 lbs (which I needed to do anyway) since last year.

My husband brought me to the best pastry shop in town today so I could have a farewell to gluten treat, but nothing looked appetizing, nothing. I went in thinking of a croissant, she had almond croissants, which is what I wound up with. Terrible. It tasted terrible. He got an eclair, it tasted rotten. I keep trying to find the bright side...I just can not convince my brain that this food is anything but Draino. One more day left.

Gosh I wish you had a different doctor. IMHO he should have stopped the challenge not medicated you so you could continue it. I am sorry you are having to go through all this. Unfortunately even though you are feeling really awful I doubt you will have a postive blood test with this short of a challenge. DO NOT let him convince you to continue or redo it, please... He didn't need to gluten you to test for other things and if other problems are suspected your glutening may IMHO confuse things not clear them up.

I hope you are feeling better soon.

Takala Enthusiast

Today was my first visit w/ the new GI Dr. and he is making me eat gluten! I have to go back Monday for a load of blood tests and an ultrasound. He said even though I've been Gluten-free for over four years, five days eating gluten would be enough for the antibodies to show up in the test.

Does anyone agree? At all? Been through it? I am so nervous and just afraid to do that to myself. I am dreading the pain.

__________________

This is so untrue and such a prime case of medical malpractice, I don't know where to start. I almost thought it was a gag post except you've been here a while.

I would not only report him to the state medical board, but let him know you are doing it. Also, report the medical insurance company, because frequently doctors use the excuse that "they have to run all these tests because the insurance company says so." Tell your Primary Care Physician that this is gross incompetence and that he is not to recommend this GI to anyone else, if you had to get a referral to see one. By following these instructions, you have been made ill. The first rule is Do No Harm, not Pad the Lab Company's Referrals.

You are going to get punked. This is how this works.

5 days isn't enough to cause you to form antibodies, or rather, antibody levels that show up in a high enough number to be indicative of a positive test result for Celiac/Gluten Intolerance.

You go back for a blood test to show the antibodies to wheat proteins, and you don't have them.

The incompetent GI Doc then announces You Do Not Have Celiac or Gluten Intolerance. Therefore, this medical misdiagnosis follows you around and many subsequent doctors look at this test result- AND THEY DON'T ACKNOWLEDGE YOUR DISEASE. Therefore, they think any other diseases that are related to Celiac are less likely for you to have.

You're now in a state of being too brain fuzzed by gluten to be able to think clearly to react properly. Further harm.

Whether or not you have active antibodies to wheat proteins NOW, and a medically induced auto immune reaction triggered NOW, has no bearing whatsoever on whether or not you have something like gallbladder disease or another undiagnosed allergy or medical condition.

At best he is going to look at you like a lab rat if you complain of severe stomach upset and very likely announce you have IBS, irritable bowel syndrome.

Don't play the game anymore.

dksart Apprentice

Well, I don't have insurance. Can't afford it right now. I go to a clinic/hospital an hour away for the (mostly) free care. I had to wait three months for this appointment, it's like that with any of the dr's and you get whatever doctor is available. I'm just glad to get to see a doctor at all in most cases. It took almost exactly a year for my Rheumatologist appt. By the time I got to go, the symptoms that I had then were mostly gone.

Ahorsesoul Enthusiast

"...I tried to explain to the waiter that I could not have anything with flour so he took the flower off the table..."

I'm going to make a kitchen sign with this on it!!!!!!

rueyn Apprentice

Well, I don't have insurance. Can't afford it right now. I go to a clinic/hospital an hour away for the (mostly) free care. I had to wait three months for this appointment, it's like that with any of the dr's and you get whatever doctor is available. I'm just glad to get to see a doctor at all in most cases. It took almost exactly a year for my Rheumatologist appt. By the time I got to go, the symptoms that I had then were mostly gone.

I wonder about printing out some kind of info that specifically says gluten challenges need to last at least a month to be effective? Only you would know whether or not something like that would offend him (hopefully it wouldn't...open-minded doctors are awesome!). Don't know if you even need to bother at this point, though - you should be done with the challenge soon?

Keep your chin up! :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    2. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    3. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    4. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    5. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748

    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.