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Has anyone done a successful gluten challenge for testing?

tootie

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tootie Rookie
tootie
Posted

My GI wants to test me for celiac. I have microscopic colitis, osteopenia and lactose intolerance.

I have been gluten-free for several years now. My doctor says maybe I haven't done a very good job because of cross contamination.

I need to do a gluten challenge to be tested.

Has anyone done a challenge successfully for testing? I know the rate of false negatives is high.

I am on week 4.  She is going to do the biopsy first since the blood takes longer to register then we'll do that after.

What did you eat? Does it matter whether it is whole wheat or white bread? What are the best foods? How about soft pretzels? How much? There doesn't seem to be an agreement even among the experts.

Please share your experiences on what you did (ate and for how long) I know for some adults it can be up to a year.

It is important to me because if it is positive it can impact my children and my likelihood of other diseases.

Thank you in advance for your insights.

Oh, if you show damage but not enough Marsh 3 did they call it negative, or did they decide it wasn't long enough?

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Ennis-TX Grand Master
Ennis-TX
Posted

Half a slice of bread at least a day, some have used a few tsp of pure wheat germ or wheat gluten. If you show any damage period that is a sign you have celiac, if you show no damage consider the size of your intestines and the chance they could have missed it. There is also the condition NCGS that could be the issue.

 I opted out of my last gluten challenge retest...my symptoms are so severe and apparent it is not worth it and life threatening. If the doctor insist I might consider eating a monte cristo or pizza in the doctors office, they can observe me lose motion control collapse on the floor and start vomiting unable to move hoping I do not choke on the floor like last time.  But I would require substantial monetary compensation to even consider the act first.

Lorjenn22 Apprentice
Lorjenn22
Posted

okay first i would start w different gi doc bc if you are going get tested you should not be gluton free! that will affect test! as for bread u hv eat gluton free bread if u are celiacs! gluton is in or is flour its not  its just weat! flour is in alot of things! some plp that hv celiacs are allergic to dairy. i know alot abt this bc several plp including me in my life that are celiacs! things to avoid would be salads w croutons, most soups out bc the broth made w flour, all bread unless its specified gluton freee n baked goods unless otherwise specified gluton free! 

cyclinglady Grand Master
cyclinglady
Posted

Hi Tootie!  

Four weeks of consuming 1 to 2 slices of bread (or equivalent) should be enough  time for an endoscopy per all the experts.  The blood test requires a much longer period of 8 to 12 weeks.  I would go as long as possible, if you can stand it.  Some people develop antibodies fast and others develop them slowly (it can take a long time for them to diminish as well).   It is one  of the reasons that there is no consensus among celiac experts ( that and a lack of studies).  It is good that you are under  a doctor's care.

Eat cake, sourdough, cookies..... all your favorite foods.   I did that between my blood test and biopsy.  I just had anemia, but after gorging on gluten filled foods, by the end of seven weeks, I could tell that gluten was not good for me.  My biopsies confirmed this.   I was also willing to give up gluten for life too. 

Because we are all unique, healing times vary.  

tootie Rookie
tootie
Posted
  • Author

Thank you.

I am going to try to go 12 weeks before the biopsy. I want to get the biggest bang for my buck with what I eat, because I fear this may just be a waste of time. So that is why I am asking what people ate that avoided a false negative.

I have read anywhere from 1/2 slice of bread to 4-6 slices of bread. Some sites say white bread has more gluten? But I've been eating whole wheat. I've also been considering seitan (which is basically vital wheat gluten- vegan meat apparently)

From the studies I've read only 50-85% of known celiacs test positive within 3 months. Ugg. Probably lower for others.

My GI said if the biopsy is result questionable because of time (some damage, but not enough) we could do the gene testing as well. I know that test only rules it out, not in.

Whatever the result is, I just want to be confident that it is accurate, but that is probably not possible.

ravenwoodglass Mentor
ravenwoodglass
Posted

You say you have been gluten free for several years. Have you noticed any increase in symptoms, even not GI related, since you went back on gluten 4 weeks ago?  As far as how much to eat if you can tolerate it just go with a regular gluten filled diet for the rest of the challenge. If you are having severe symptoms then just a couple slices of bread might be enough. Use the time to go to your favorite restaurants and eat your favorite gluten filled foods that you might have missed while you were gluten free.  As far as the chance that you might have been getting CC previously do check out the Newbie 101 thread at the top of the Coping section. You may be able to spot stuff you have or haven't been doing that could have been CCing you. I hope you get clear answers when you get your testing done.

Victoria1234 Experienced
Victoria1234
Posted
11 hours ago, tootie said:

My doctor says maybe I haven't done a very good job because of cross contamination.

Did you have symptoms that went away and now they are back? 

And why did you go gluten-free in the first place? Did you suspect celiac and not get tested? Why test now?

 

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tootie Rookie
tootie
Posted
  • Author

I am getting tested now because I am currently seeing a GI because I developed chronic watery D for 6 months now. I had a biopsy of my colon and was positive for lymphocytic colitis for which they have no cure. The GI said there is a high correlation between celiac and LC and since I have other issues that could correlate I should be tested. (osteopenia and lactose intolerance).

I originally stopped gluten because I took my son off it due to a ruptured stomach and gerd also possible ASD tendancies. I started with him in solidarity and because I won't require them to do anything I wouldn't do myself. But after a time, I found I felt better and my arthritis pain went away and I haven't developed a bone spur since I stopped, which I was getting in my fingers regularly. So I remained gluten free.

Since I started back a month ago, the symptoms haven't been horrible. Some of these could just be coinsidence, not related to the gluten.  I have intermittent abdominal pain, still have D, extreme gas and bloating to the point I feel like my abdomen could actually pop, lol, headaches (which I never get) but have had them every day, an upper eyelid twitch like tightening (but only when I blink)  and a slight numbness around the same eye (comes and goes), feels like food gets stuck in my throat. Also, fatigue but that is likely due to all the carbs I've been eating, because I was low carb before so I think I'm just not used to it.

Mitchgeek Newbie
Mitchgeek
Posted

Hey There.

I was successfully diagnosed Coeliac a few months ago after 11 years of false negatives.

This came after a positive match for villus atrophy with a gastroscopy/biopsy.

I ate pies, toast, sausage rolls and pasta every day for 4 weeks. I did get very sick and the blood results came back positive for the antibodies.

I was also tested positive for the gene to confirm that it was possible for me to be Coeliac in the case that there was another negative antibody test,

which I would recommend you do if you have nowhere left to turn.

 

tootie Rookie
tootie
Posted
  • Author

Wow. 11 years? How many times did you test? Did you have more than one biopsy? Was it because you were gluten free before testing? My GI did mention the genetic testing if necessary. I'm glad you finally got your diagnosis.

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    • SamAlvi
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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