Risks Of Gluten Challenge?

[Noobette]

I just had my first visit with a GI yesterday, and she said exactly what I expected: unless I do a gluten challenge, I will not have a clear celiac diagnosis. My question: is a challenge worth it? I know the answer is different for everyone; I could use a little help figuring out if it's best for me.

Background: started eating mostly paleo 5 years ago for general health reasons. Immediately dropped the extra 5-10 pounds I'd been carrying for 20 years, plus my joint pain improved and my lifelong canker sore decreased dramatically. I ate wheat maybe once a month - my bad knee would hurt the next day, but that would be about it.

One year ago ago I did a 23andme test and learned that I have HLA-DQ 2.5 and 8. I decided to cut gluten out completely as a precaution so I wouldn't get celiac in the future. I did not worry about cross-contamination at home or in restaurants, however.

Eight months ago (5 months after going gluten-free) I started having lots of upper GI symptoms, along with fatigue and weight loss. Had lots of testing, basically normal. My endoscopy showed increased lymphocytes, but no villus blunting; celiac panel was normal, as one would expect after a year gluten-free.

My nutrient tests came back normal, so I know I'm not malabsorbing. So I guess my immune system is on alert, as evidenced by the lymphocytes, but there's no damage. I have improved somewhat over the past couple of months (taking lots of supplements).

I'm fine with never eating wheat again - that was my plan before I got sick anyway. But being super-paranoid about cross-contamination when away from home is pretty disruptive, and doing that for the rest of my life if it's not necessary does not sound good! I started being strictly gluten-free after my biopsy, and I've found it quite stressful. I'm talking about asking restaurant workers to change gloves, not eating anything that's been chopped on a cutting board that ever had wheat on it - stuff like that.

Since wheat never gave me terrible symptoms in the past, I'm not too concerned about a gluten challenge making me feel awful. I'm much more worried about damaging my gut and making my intestines more permeable, which could lead to antigens leaking into my bloodstream and triggering an autoimmune disorder. I've not been able to find much info about whether this concern is warranted.

As I see it, I have 3 options:

1. Do the gluten challenge

2. Assume I have celiac and do the super-strict gluten-free thing forever

3. Assume I have some kind of reaction to gluten, stay firmly gluten-free, but not worry so much about cross-contamination (since my gut has been undamaged while doing this)

I'm inclined to forgo the gluten challenge for now. I have hopes that testing will improve in the future, and people in my situation will be able to get diagnosed without such a long gluten challenge. But, I'm still undecided!

I would love to hear input from anyone! Is there any real risk involved in doing the gluten challenge, or am I being paranoid?

[BlessedMommy]

There can be risks, yes.

 

Keep in mind that your mileage may vary from mine. I had neurological complications 10 days into my gluten challenge. (though I had NEVER had neuro complications from gluten before the challenge)

 

Due to not wanting to have a stroke at my young age, I decided on being strictly gluten free. My complications, though, were RARE. The vast majority of gluten challenging people will not have a TIA. Only you can access the benefits and risks and weigh it out for yourself. What I would suggest if you want to do a gluten challenge is that you only eat 2 pieces of bread per day (or equivalent) and otherwise eat your regular diet. If you don't overdo it, it will increase your chances of getting through the challenge better.

 

After time and practice living the celiac lifestyle, it gets easier. The rule of thumb is always bring your own food. (my family and I abbreviate it to BYOF.) I have a car kit where I carry a knife, a flexible cutting board, a minature skillet, a roll of aluminum foil, packets of nuts, salad dressing packets, individual peanut butter cups, individual packets of hummus, lara bars, soy jerky, stuff like that, etc. That way when I'm out and about, I don't have to starve. I can grab a salad at the store's deli section and an apple in the produce section and be able to throw together something on the fly.

 

Much of the stress in the celiac lifestyle comes from when people try to get other people to cook gluten free for them when the other people don't understand celiac. There's simply too many possible mistakes to make and too high of a learning curve. If you just BYOF, you can focus on the joy of enjoying your friend's company and not be focusing on whether they cooked the food right or not. Life is just too short to spend much time quizzing people on their food prep methods.

 

The only exceptions to BYOF are either people who have training in preparing safe food or food that's very difficult to mess up in the first place. When I go out to Wendy's, I ask for a baked potato and ask them to please leave it in the original aluminum foil and not to unwrap it. Or I'll get things like smoothies from restaurants. The only types of restaurants that I usually get anything resembling a normal meal are restaurants that have a protocol for safe gluten free dining. Even there I tend to emphasize that I'm not a fad dieter and will get sick from small amounts.

 

As far as your 3 options that you listed, I think that 1 and 2 are probably the most reasonable. Here's how I see it, a negative biopsy doesn't mean that your intestines aren't damaged, it only means that no damage was found. If you actually have celiac and you assume that you have some other type of gluten problem other than celiac and allow trace amounts in your diet, you will be damaging yourself. It only takes a very small amount to start an auto immune reaction.

 

This is true of all celiacs, whether they have symptoms from cross contamination or not.

 

I understand the dilemma that you're facing and I only wish that science had come up with a better diagnostic process. If you don't have violent symptoms and you want to try a gluten challenge, you could start with small amounts and proceed carefully.

 

Good luck!

[Noobette]

Thanks so much for your thoughtful response. I will consider your input carefully. I love your idea of a car kit! That seems so much more practical than trying to carry snacks in my purse.

[nvsmom]

I would say option 3. (eating gluten-free but not carefully) is quite risky in the long term.  If you do in fact have celiac disease and get cc'ed or eat gluten once or so a month, your body will be in a constant low level of sickness and inflammation... not good.  It could lead to future health problems.

 

The gluten challenge is often risky but you are exposing yourself to gluten periodically anyways so it is doubtful that you would do any permanent damage to yourself if you eat gluten for 2 to 3 months... But one can't be sure, it is just very unlikely.  You will probably set your health back a bit though.

 

Eating strictly gluten-free for life is the safest, although it is a pain in the butt sometimes.... You can get used to it though.

 

My vote would be to continue gluten-free because you know you are affected by gluten and you appear to have early celiac damage.  Not malabsorbing nutrients can happen to celiacs and doesn't  rule out anything.  I was an undiagnosed celiac for over 30 years and my nutrient levels (except vit A) were perfectly fine, and my B12 was even high.  Malnutrition is just one possible symptom of celiac disease.

 

Good luck in whatever you decide.

[1desperateladysaved]

I would also consider if any genetic family members would be influenced by a definitive diagnosis.  The disease being genetic, if one family member has it, another has greater chances of having it.  Is there anyone not believing your diagnosis that may be swayed?

 

I didn't do the challenge since I was fully convinced that gluten was a problem for me.  However, my situation was different, because even a tiny mistake seemed to make a big difference. 

 

Whatever you decide, I wish you the very best in gluten free future.

 

Dee