Gluten Challenge- What Can I Eat?

[AmeliaB100]

History: A little over a year ago I was diagnosed with Celiac Disease by EGD/biopsy with no prior hint that it might be Celiac. Over that year, I ate strictly gluten free and my symptoms improved but did not completely go away. I decided to get a second opinion last week and the new GI says that there is nothing in my file that indicates that I have Celiac. So, I am doing a Gluten Challenge and then getting blood work (for the first time on gluten) and a new EGD.

 

Question: What can I eat on a Gluten Challenge?

 

The new doctor said that I should eat one to two slices of white bread a day. Well, I've been ignoring that and eating all of the gluteny foods that I have not been able to eat for a year. I have not been going completely overboard, but trying to stick to what I think is one to two slices worth. I'm also sick: diarrhea, naseau, cramping, fatigue, and depression. So, today I clarified with his office, what can I eat, can I substitute other things, like a wheat tortilla, and they said no.

 

Well, I am more than just a little angry. I have to be sick and in pain and yet I can not eat things that I at least enjoy/miss/crave?

 

So, I would love to hear what your experiences are on Gluten Challenges and if anyone knows why it would be only white bread that I could eat?

[kareng]

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I don't see why it matters if your gluten is a donut or a slice of pizza.  Its possible they have no clue and you might want to look elsewhere for a GI?

[bartfull]

Doughnuts. Eat LOTS of doughnuts.  Eat raised doughnuts. Eat old fashioneds. Eat them chocolate covered and glazed. Eat some crullers and some jelly doughnuts. Eat some doughnut holes. Eat some with powdered sugar. Eat some Boston cream doughnuts. Eat every doughnut that comes to hand and please, think of me while you're doing it.

[RMJ]

Just a thought, if your new doc doesn't know that many foods besides white bread will work perfectly well for a gluten challenge, does he really know how to interpret your previous biopsy results? Can you get a copy and post them here?

Enjoy your gluten while you can!

[HavaneseMom]

I was told that I needed to eat the equivalent of two slices of bread a day. I have never heard that it has to be bread. As far as I know, gluten is gluten, so eat lots of the good stuff! You could always eat two slices of bread plus the yummy gluten filled foods.

I would really question and research what your new doctor is telling you about your previous results before you go through with the new blood test and endoscopy/biopsy. It has only been a little over a year, so you should be able to get a copy of your endoscopy report and biopsy report from the lab and your first GI doc to see what it says for yourself. Did you go for a second opinion because all of your symptoms didn't completely go away? If so, there are a lot of people who still have some symptoms after a year.

[LauraTX]

Doughnuts. Eat LOTS of doughnuts.  Eat raised doughnuts. Eat old fashioneds. Eat them chocolate covered and glazed. Eat some crullers and some jelly doughnuts. Eat some doughnut holes. Eat some with powdered sugar. Eat some Boston cream doughnuts. Eat every doughnut that comes to hand and please, think of me while you're doing it.

 

This.  LOL

 

 

But seriously, eat whatever you want.  They say the equivalent of blah blah blah and your doctor may have taken it literally.  Either that, or the person relaying the question may have just said no because they weren't sure.  But if you only want to do the gluten challenge and do it right, eat the heck out of everything gluteny if you can deal with it.  Just watch what you cook in your kitchen so you don't have to toss things out like a colander, etc.  

[ravenwoodglass]

It sounds like you got a receptionist rather than a nurse on the phone. One that was either busy or impatient. The doctor may be clueless but it might also be the person on the phone couldn't be bothered to ask and just found it easier to parrot the doctors words. As long as you are getting gluten you should be fine. Eat a croissant for me please (but don't tell me how good it was). 

As was mentioned do get a copy of your records from the first doctor. If the second doctor was right and there is no celiac diagnosis in your record ask the first doctor why. Some doctors think our intestines need to be totally destroyed before they will diagnose and your villi may have only been at Marsh1 or 2. It also could be that the doctor 2 may just want to do his own testing ($) but IMHO if you had a previous diagnosis he should simply be looking to see if your numbers have gone down and if your intestines have been healing. Something he can't do if he is having you do a challenge since it is going to undo all the healing that may have taken place. Did you ever go back to doctor number 1 to see if he could help before you went for the second opinion?

Do be sure to check the Newbie 101 thread at the top of the Coping section to be sure you haven't been CCing yourself and that is the cause of the continued problems. 

[squirmingitch]

I agree with ravenwoodglass.

 

And if you're determined to go through with this please eat half of Barty's donuts for me.

[nvsmom]

Yep.  It sounds like you talked to someone who doesn't know how to bake.  The flour in a wheat tortilla is the same used in bread!  LOL 

 

Have a cinnamon bun, a big juicy pub burger and a beer for me.  I've been missing burgers lately.  

 

Perhaps try to eat the majority of your gluten later in the day so your mornings are a bit better.

 

Good luck!

[cyclinglady]

Sourdough.....Bread. Enjoy!

[AmeliaB100]

Thank you everyone for all of the replies. Sorry this is so long.

 

I asked some kind of a medical assistant, she supposedly called the doctor, and this is what she said. Based on some others things that she said while I was in the office (SIBO testing) I don't think she was the most knowledgeable about the GI world let alone Celiac. So I am going to chalk it up to her not having enough knowledge to ask the question well or understand the answer. I picked the doctor by calling who seemed like he was the Celiac specialist for Phoenix, AZ, but he wouldn't do a second opinion. They recommended this doctor.

 

Before seeing this new doctor I requested my entire file from the GI who diagnosed me. Reading through the entire file I found this in her notes. "On the upper endoscopy the patient had biopsies that were consistent with but not diagnostic of sprue. The patients symptoms are suggestive of sprue. She and I have talked about that although this is not a definitive diagnosis,"

 

That is not what she said to me. She said you have sprue, this is what has happened to your body, have you been to anywhere tropical, you have Celiac. And I said, are you confident with this diagnosis, and she said yes, the only other thing we could do would be to take a DNA test. (I'm actually really quite furious now.)

 

There is no blood work at all in the file and I don't remember her ever telling me that she did any of the antibody tests or those results. So there is no way to check my blood test notw vs. my pre diagnosis blood test.

 

My pathology report says "Duodenum, Second part, Biopsy: Focal intraepithelial lymphocytosis. The sections through the small bowel biopsy show fragments of duodenal mucosa with focal intraepithelial lymphocytosis and intact villous architecture. There is no evidence of peptic duodenitis or microorganisms." And then at the bottom of the page it says, Interpretation "duod ?sprue mild chr gastritis o h pylori colon bx all neg." Do you want me to scan this page and post it? Or is that enough information?

 

As far as why I went for a second opinion, I went back to the first GI two more times after the diagnosis and her last suggestion was to take fiber and an antibiotic. She also said that if I get exposed to gluten that I could have symptoms up to three weeks later. Well, the supplements didn't change anything and since I don't go more than two weeks without getting sick, I can't really figure out if and when I'm getting cross contanimation. And as far as some people still having symptoms after a year, I am sick frequently and severly enough that I still don't think that I can hold down a job.