Negative Biopsy After Gluten Challenge

[CMG]

Hi all,

I wanted to give an update on my gluten challenge. As you can see from the title, my biopsy was negative.

I had been largely gluten free for close to a year - cheated once in a while, like when my sister baked cookies. I learned in December that I have the DQ2 gene and decided to do a gluten challenge for testing. After about a month of 3 - 4 servings a day of wheat, my GI doctor thought my symptoms were significant enough for an accurate biopsy.

His practice does look for all the various stages of damage, not just complete villous atrophy. We talked about this. He said my villi were perfectly normal. We also talked about the flare up of my symptoms during my gluten challenge and the fact that the symptoms have subsided since going gluten free again. Lucky for me, I have a doctor who acknowledges that it is possible to be severely gluten intolerant without having celiac and doesn't think I'm crazy. So, his position is if you know you feel better gluten free and you're comfortable with the challenges of sticking to the diet, then do it. The fact of the negative biopsy simply means that I don't have to be monitored for complications of celiac.

Now, of course, I'm kicking myself for the things I forgot to ask. Like why did he not run a blood panel when I did the challenge? My only blood panel was done when I was gluten free (in connection with the genetic test, which was recommended by my allergist). Also, what about my low white blood counts that turned up in my most recent physical? My GP said it was consistent with an autoimmune disease.

At the end of the day, I know I'll stay gluten free, but feel frustrated that I went through the pain of the gluten challenge and I really don't have any more information than I did before.

CMG

[julirama723]

I feel your pain. I have almost an identical story, though I was gluten-lite for 2 years, with intermittent periods where I would be totally gluten-free. I did the gluten challenge, which was the worst month of my life--my symptoms were so severe and I had such dramatic changes that a biopsy was scheduled. It turns out that not enough samples were taken, so my results were negative for celiac disease. I do not know if more samples were taken I would have been dx positive, or if I simply did not eat enough gluten for a long enough period of time for damage to be visible.

Blood tests should have been ordered, but those also have quite a reputation of being falsely negative. Mine came up negative, but it wasn't until my appointment with an allergist that I discovered I actually have a selective IgA deficiency, which can impede or prevent a celiac diagnosis, simply because I don't make virtually any antibodies in the intestines, and a blood test only comes up positive if the antibodies have made it into the bloodstream (which I've read, could take years.)

I was very upset immediately following my EGD and gluten challenge. I was furious. I didn't get ANY diagnosis, no "official" answers. As time passed, I began to look differently at it. What's done is done. That challenge removed ANY doubt in my mind, if I ever wondered whether or not I was imagining things. It was VERY obvious to me (and my poor fiance who had to deal with me and all my GI symptoms in full force) that gluten hurts me and makes me sick, regardless of what their tests show. I know to stay away from gluten.

Do I have celiac disease? Maybe, I don't think I'll ever know for sure. But I do know that I'm much better off staying away from gluten, and I was lucky to have discovered this early in life, before irrevocable damage had been done to my body.

[CMG]

Like you, the greatest benefit for me is that doing the challenge left no doubt in my mind that I cannot have gluten. My husband was asking every day when it would be over so I could get back to my gluten free diet and really wanted me to give up the challenge and skip the biopsy because I was so sick. The rest of my family gets it that I have an issue with gluten, but does not take it nearly as seriously as if I had a positive diagnosis.

[julirama723]

Like you, the greatest benefit for me is that doing the challenge left no doubt in my mind that I cannot have gluten. My husband was asking every day when it would be over so I could get back to my gluten free diet and really wanted me to give up the challenge and skip the biopsy because I was so sick. The rest of my family gets it that I have an issue with gluten, but does not take it nearly as seriously as if I had a positive diagnosis.

This is my worry as well--that others will think I'm just over-reacting. My mom is a diagnosed celiac, and that's what compelled me to get testing; I used to think all of these GI symptoms were NORMAL, or maybe I was just eating too much or something. In a way I think that has worked against me. All the doctors I've seen don't know me, and probably think I'm a momma's girl and want the exact same diagnosis. What they don't seem to understand is that I'd had symptoms for a YEAR before my mother even became ill. What is worse is that I think sometimes my mother doesn't even believe me, since we didn't have the same symptoms and her IgA was off the charts. (I had to patiently explain that I'm deficient and nothing would ever show up for that test.)

Somedays I wish I had an official diagnosis, and some days I'm truly thankful I DON'T! But that wonder is still there, do I or don't I? I am reluctant to say I have celiac disease because I've not been diagnosed. I feel like I would be lying if I told people that, but it would certainly make my life easier; "gluten intolerant" makes me sound like a fussy eater.

But, what are the other alternatives? Eat gluten because I "don't" have a diagnosis? YUCK!

[coldnight]

Curious... did either of you have GI symptoms? Even though you lacked apparent GI damage? Also, how long did it take for you to recover after eating gluten for a prolonged period? And how long does it take you to recover if you accidentally eat some?

Thanks, I don't want to do a challenge for sure, it was too much trouble getting off gluten. Still trying, recovery has been very slow, but very promising... just based on the very few meds I take now. Anyway, thank you for any information, I am curious and impatient about how my own recover might work, I'm not a year in, just several months.

[Fiddle-Faddle]

On the bright side, if you do not have an official diagnosis of celiac, then the insurance companies will have no excuse to deny you coverage (which has happened to some here when changing insurance companies).

You do, however, need to keep on top of any developing autoimmune issues. It's always possible that you DO have celiac, and that your villi didn't get damaged enough in one month to show up on the biopsy. Some people consider gluten intolerance as simply early-stage celiac.

[CMG]

I had chronic diarrhea, urgent trips to the bathroom; bloating, gassy and reflux every time I ate things like pasta and pizza. It all improved within days of going gluten free - which I did initially to help my then-4-year-old adjust to a gluten free diet. I figured if we were in it together it would be easier for her. So that's why I never got tested before going gluten free - I never knew I needed to!

Other symptoms: brain fog, neuropathy, itchy blisters on my scalp and neck, night sweats, mouth sores, dry eyes, joint swelling and pain, to name a few. It all flared up when I did my challenge, and was 90% better within 3 -4 days of getting back on the gluten free diet.

I think I have had a couple of minor glutenings in the month since I have been back on the gluten-free diet - extreme fatigue, brain fog and dizziness seem to come on immediately and are better the next day - but then I wake up with joint pain and swelling (mostly fingers and hips) which lasts a day or two.

I also have discussed my low white blood counts with my mom, who is a nurse. She has researched and said to her they clearly indicate an autoimmune disease.

[Gfresh404]

It is a little comforting to know that other people are going through the same thing I am. Negative tTG and negative biopsy while I was on wheat, not a whole lot but still was unable to function due to damage to gut. Huge positive response with gluten-free diet. 6 weeks later had full celiac blood panel run and they looked for those two specific genes said to be associated with Celiac, all turned out to be negative. I almost just wish it was Celiac, I feel if I just tell people I am gluten intolerant they will look at me funny and think I am crazy. I almost feel like a Celiac poser.

[mushroom]

I almost just wish it was Celiac, I feel if I just tell people I am gluten intolerant they will look at me funny and think I am crazy. I almost feel like a Celiac poser.

I just tell people that I cannot eat wheat or gluten. If they look at me funny, I lie (well, it's probably not a lie bit I don't know that one way or the other) and say I am celiac. Let them try and prove I am not. If we can't prove we are, they sure as heck can't prove we are not. Don't worry about it. Just get on with life. I guess when you have been around as long as I have you don't care what people think. You just jam your purple hat on your head, wear your comfortable support shoes, and let them think whatever they like. I don't exist to please someone else. I live to survive the bsst way I can.

[lizard00]

Of great importance, CMG, is that you were gluten-free for a year before the challenge. You may have been healed, and then did the challenge. So walk through this:

You have 22 ft of small intestine. Let's assume for the moment that you DO, in fact, have celiac. In that year of being gluten-free, you could have potentially erased the effects of gluten in your intestine. When you started eating it for the challenge, you had to start the damage over again... It's VERY possible that your biopsy was negative because the damage wasn't yet severe enough, OR because you have 22 ft of intestine to damage, they biopsied a part that had not yet been affected.

It's great that your doctor recognizes that you do have a problem with gluten, and now you have absolute proof, too. And that is a very good thing.

[coldnight]

Thanks again for the info, one more question, how long did GI distress persist? And did you ever take any medicine for it, like were you diagnosed with IBS and take some medicine for that?

(I ask because I'm having a hard time figuring out what is possibly healing versus withdrawal versus maybe just some fluctuation and a problem with carbs in general.)

[julirama723]

Curious... did either of you have GI symptoms? Even though you lacked apparent GI damage? Also, how long did it take for you to recover after eating gluten for a prolonged period? And how long does it take you to recover if you accidentally eat some?

Thanks, I don't want to do a challenge for sure, it was too much trouble getting off gluten. Still trying, recovery has been very slow, but very promising... just based on the very few meds I take now. Anyway, thank you for any information, I am curious and impatient about how my own recover might work, I'm not a year in, just several months.

OMG yes. Prior to the gluten challenge, when I was "gluten light" my first symptoms were horrible cravings for anything made with flour, and water retention. I would eat wheat bread and swell up like a balloon, yet I'd immediately want to eat more. I remember eating an entire loaf of whole wheat french bread in one sitting. A few months later, my symptoms changed. As far as GI symptoms are concerned, I would have gas and constipation as my main symptoms, along with weight gain and bloating. And I'm not just talking about a bit of minor bloating. I would put on pants in the morning that fit me fine, I would eat breakfast, then 30 minutes later my pants would be about 2 sizes too small. I looked pregnant.

The gluten challenge was truly awful. I think because I was consuming so much gluten, it REALLY wreaked havoc on my body. I no longer had to worry about C, instead I had diarrhea EVERY SINGLE TIME I went to the bathroom for a whole month, including days where it was so bad I couldn't go to work and couldn't leave the house, because I was running to the bathroom every 15 minutes. I of course still had the horrible bloating, gas, cramping, abdominal distention. It also was incredibly painful to go to the bathroom, like I had eaten about 10 habanero peppers, it just burned like crazy. I had a multitude of other symptoms that were NOT gastrointestinal (brain fog, lethargy, bouts of extreme rage [it was way past irritability]), thyroid episodes, and even an episode where it felt like I couldn't move my arms, and let's not forget that I gained 15 POUNDS during a 1-month challenge, even though my calorie intake remained the same as when I was on a gluten-free diet.

As for getting off gluten again, good lord I had no problems with that. I was so sick and tired and felt so disgusting (not to mention that none of my clothes fit me anymore) that I was counting the days until I could be done eating this poison.

[julirama723]

Thanks again for the info, one more question, how long did GI distress persist? And did you ever take any medicine for it, like were you diagnosed with IBS and take some medicine for that?

(I ask because I'm having a hard time figuring out what is possibly healing versus withdrawal versus maybe just some fluctuation and a problem with carbs in general.)

When I was gluten light, GI distress would last basically from after breakfast of one morning, until the next morning when I woke up. I had a small window of freedom from symptoms for that hour or two before I ate breakfast. I think because during the night I was able to stretch and get rid of all the gas (which was truly horrendous, omg) and wake up feeling halfway normal. I thought this was normal, for whatever reason.

At the end of my gluten challenge, I had to do a colonoscopy prep, so I was cleaned out completely. My GI symptoms stopped as soon as I "cleaned myself out" for the EGD and colonoscopy. I had no more symptoms from that point on (unless I was glutened, which has happened a couple of times.) It took me a couple of weeks to get my energy back. In fact, I think that's the thing I hate most about getting glutened, I am totally exhausted for about a week following the incident.

I never took any meds, probably because I never went to the doctor for it. Oh well, I take that back. I don't have a doc here in this small town, so about a year ago I went to the walk-in clinic when I had a virus. I also brought up my GI symptoms to the doc, thinking it was either celiac or candida, and he just frowned at me, asked if I was depressed, then proceeded to change the subject and lecture me about birth control for 20 minutes. He didn't care, he wasn't concerned, probably because I didn't "look" sick.

One thing I will say is that I have a LOT of other food intolerances that I never noticed before when I was eating gluten--I think the gluten was so powerful that it just overshadowed all my other problems. Or perhaps they developed later? I'm hoping some of this is temporary, but I'm also intolerant to the following foods: corn, grains, soy, dairy, grain alcohols, and fruit. I'm sure I've forgotten something. BUT there is a bright side. I was able to eat small pieces of potato with no problems, and I hadn't been able to eat potato for YEARS. So there has to be some healing going on!

If you are still having problems, you might want to try eliminating some of the most common offenders, like dairy, corn, soy, grains, in that order.

[coldnight]

If you are still having problems, you might want to try eliminating some of the most common offenders, like dairy, corn, soy, grains, in that order.

Yea, that sounds like me. I only ate meat and rice for 2 months. (with Kraft BBQ in place of soy). Now I can handle a little corn in tortilla chips, but the rest I don't eat. Not nightshades, raw vegetables, a banana occasionally, no dairy, no soy, no other grains.

I feel a lot better, slowly. I've been able to drop off all the medicine I was taking, which was a lot, I was just wondering how long it took you guys. For me it's really hard to tell if I've just dropped off medicine too fast, or something else is going on... but being off gluten is definitely a large improvement. Just wish I knew exactly why, but don't want to do a challenge, so I guess I'll just wait. =)

[julirama723]

Have you looked into the Specific Carbohydrate Diet? It really does wonders for a lot of people with multiple food intolerances, or those who just aren't healing the way they should be.

I'm sort of on a pared down version of that right now, eating only vegetables, meats, fats. I don't have problems with raw vs. cooked, but I am pretty sure that I have problems with fructose malabsorption. Darn carbs!

[Gfresh404]

Is anyone else experiencing problems with fat digestion?

I feel like whenever I eat a handful of nuts they just go right through me and I do not absorb them. I also get gas and burp a lot after eating them. They also do not seem to fill me up. It is difficult to get an adequate amount of calories while limiting fats. Especially when I seem to have a problem with whole grain corn.

[mushroom]

Is anyone else experiencing problems with fat digestion?

I feel like whenever I eat a handful of nuts they just go right through me and I do not absorb them. I also get gas and burp a lot after eating them. They also do not seem to fill me up. It is difficult to get an adequate amount of calories while limiting fats. Especially when I seem to have a problem with whole grain corn.

Are you supplementing with digesive enzymes?

[Gfresh404]

Are you supplementing with digesive enzymes?

I was at the beginning and then slowly weened off of them. How long does it usually take to be able digest fats properly again?

[mushroom]

I was at the beginning and then slowly weened off of them. How long does it usually take to be able digest fats properly again?

I don't really know. I have been on and off and on and off them. Whenever I hit a bad patch, I take them again.