Gluten or SIBO; Should I gluten challenge to find out?

[MelliF]

First off I want to say thanks to everyone who contributes to these forums. I've been reading like crazy the past few weeks and learned so much! But now I'm ready with questions. I've typed and erased this email over and over, trying to get at what my question really is, hope it's clear. 

Briefly: 40 yo female with gut symptoms for 20 years. Mom, grandpa and his sister, and great-gma all had gut symptoms, the latter were two anemic women with osteoporosis. Six years ago I went "paleo" and gave up gluten, legumes, dairy, etc. My symptoms of migraines, reflux, nausea, bloating, cramping, and diarrhea for the most part went away. Aside from being glutened twice a few years ago, I've started eating the other foods and feel good. Then two years ago the gut symptoms returned. I lost 20 lbs, have vitamin D deficiency even with prescription supplements, low bone mass, and compression fractures. Since I was already gluten free, I tried the SCD diet (eliminates starches) on doctor's suggestion that I might have SIBO. Gut symptoms almost completely cleared and weight stabilized, but still trouble absorbing vitamin D.

My bone doc suggested a celiac test. My antibodies and endoscopy were normal as expected and I am DQ2 positive. My GI doc is great, but with the holidays and the phone-tag, the answers are coming slowly. She is willing to retest after a gluten challenge, but I'm torn as to whether I should do it. It seems like such an easy question, but it's not because I'm thinking too much! 

So I have a few questions that might help me decide. I know there aren't always black/white answers to these, but all perspectives help!

1. I haven’t been as careful the past 2 years with avoiding gluten as I came to think my problem was the starches. My family’s bakery opened in 2013, very roughly coinciding with the worsening of my gut symptoms, but I’m not very convinced of that being my problem. I'm only there 3-5 times a year and will sample a caramel or meringue on occasion. Could occasional cross-contamination at bakery and eating in restaurants cause my vitamin deficiencies and gut symptoms, yet not increase villi damage and antibodies to a diagnosis threshold?  

2. The SIBO explanation fits, but I still have lingering symptoms with foods that also happen to be on the gluten cross-reactivity list: coffee, potato, corn, oats, tapioca, chocolate, etc. But these are also SCD-illegal foods! With SCD I expected my gut to heal so I could tolerate these foods. Even a half cup of some of them cause issues, so maybe I'm not healing?  I don't know if it’s a lingering SIBO or a cross-reactivity due to celiac? If I'm gluten-free, would I still cross react to these foods?

3. Should I try a gluten challenge, even if I never intend to eat gluten again in the future? After 6 years, I don't miss or crave it. If I was positive for celiac, I'd quit going to the bakery and definitely be more careful. But if I'm not celiac, that means something else is going wrong and I need more tests. For the gluten challenge, I'd eat the vital wheat gluten that lacks starches so I'd know that any gut symptoms were due to gluten, but I've read that not everyone has obvious symptoms. 

I realize I could also have both starch and celiac issues. Guess my question really is, will taking 2-3 months of gluten be worth the time and potential damage? How do others who have been in my situation feel about being a "suspected" celiac, does it feel like you've left something unfinished? This has thrown me for a loop -- I thought I was healing as I lacked symptoms! And I think I'm having some identity crisis -- wondering just What Am I? 

Friends and family say I'm nuts for thinking about the challenge, but I would love some advice from people who have been through these questions.

Thanks so much for reading, and Happy Holidays!!

Melli

[captaincrab55]

My health plan requires one to be diagnosed with Celiac Disease to win a brand name medication(certified gluten free) request.       I've had several generic meds that caused issues associated with gluten cc.      It's sometimes possible to win a social security disability case when diagnosed by the Gold Standard.   Good Luck.

 

[Wildflower Morning]

I think the challenge you do first is to eat as stringently gluten-free as a celiac would (mostly whole foods--vegetables, fruits, meats) supplemented by only certified gluten-free additions.  If that hasn't helped after three months or so,then maybe go for the gluten challenge.  It doesn't sound like you're being as careful as you could be.  Maybe just careful enough to keep you below the threshold of diagnosis.  You could also have NCGS.

[MelliF]

Thanks Wildflower,

By what measure were you thinking to re-evaluate after three months? Improved Vitamin D? Being more diligent is an approach I've been thinking about but I wasn't sure what to measure success by. They are increasing my Vitamin D prescription so I'm not sure that will work. I'm symptom free right now. But like you say, I could be just below threshold and still doing damage. 

Either way, I do intend to be more careful here on out, that's a good idea!

[cyclinglady]

There are specific tests to help rule out SIBO.  Has that been pursued?

Exactly what celiac blood tests were given?  If you do not know, then get the lab copies.  If the ENTIRE panel was not given, you can not rule out celiac disease.  Get copies of your biopsy report too.  Four to six biopsies at specific areas should have been taken.

Cross contamination at restaurants and bakery visits can cause damage to your intestines if you have celiac disease.   

Really, we do not have the whole picture here, so it is hard to speculate and that's pretty much what we do here since we are not doctors!  ?

[MelliF]

Cyclinglady - I'm a immunologist so I know just enough to wonder, but not enough to help myself! I'm PubMed'ing, designing 'scientific' experiment to test foods, and speculating way too much in my own head. I need to 'talk out loud' with others, hence my post. So all other speculations welcome! I've also learned that our hundreds of "n=1" individual stories are often more helpful than one doctor's experience. 

EGD: "multiple" tissues from biopsy, that's all I got from that. Normal villi, no IEL.

Antibodies, not sure if this is a "complete" panel?

tTG IgA 3.03, (Negative <20)

tTg IgG: 2.2 (Negative <20)

Gliadin IgA 2.9 (Negative <20)

Gliadin IgG 6.7 (range not specified).

Genetic tests were serological, looked at DRB1, DRB3,4,5, DQB1. Since they weren't molecular, I don't have specific allele info. 

My GI doc says her SIBO tests are "not good enough", so we followed the celiac tests first.  We did EGD and antibodies on the possibility that I was cross-contaminated. Asking more about the SIBO test is on my long list of questions now. Another differential diagnosis have considered is microcolitis, but this is not being followed because Vitamin D not absorbed in the colon and dietary changes like I made don't typically alleviate symptoms. 

 

[captaincrab55]

2 hours ago, MelliF said:

Thanks Wildflower,

By what measure were you thinking to re-evaluate after three months? Improved Vitamin D? Being more diligent is an approach I've been thinking about but I wasn't sure what to measure success by. They are increasing my Vitamin D prescription so I'm not sure that will work. I'm symptom free right now. But like you say, I could be just below threshold and still doing damage. 

Either way, I do intend to be more careful here on out, that's a good idea!

It took 9 months taking prescription (50,000 IUs) Vitamin D to get my D level into a safe zone.

[Wildflower Morning]

Melli, I was referring to gut symptoms.  If your gut symptoms go away after three months on a stringent gluten-free diet, I would say you know you either have celiac or NCGS.  Either way, you'd need to adhere to a strict gluten-free diet.  Me, I wouldn't put myself through a gluten challenge if it wasn't absolutely necessary.  Best of luck to you!

[Momma2PirateNPrincess]

Another thing to look into is taking other vitamins and minerals with the D. From all my research vit D supplements are best absorbed when taken with K1,K2 and magnesium.

[MelliF]

Yes! I have started other supplements and I'll look into what you said about taking them together as I'm not purposely doing that. 

Im happy to supplement, but would rather find the hole and stop the leak, so to speak. But in the meantime, doing what I can!

[MelliF]

Following up on my thoughts posted here. I decided to do the gluten challenge, using vital wheat gluten (VWG) to avoid any FODMAP related symptoms I get of bloating, gas, and pain. I'll be showing my science-nerd side here   

I set up as best I could a blinded challenge with a placebo, to see if I was having psychosomatic symptoms or real symptoms. I had to know this for myself. My medical library research said it could take days to weeks to develop symptoms, and that some don't get symptoms at all. So I held off on my expectations of symptoms and tried to be objective.

I modeled my experiment off of published clinical trials: 2 weeks of a challenge food, a 1 week washout, then 2 weeks of the other challenge food, and track symptoms during the challenge. Once the 5 weeks are done, go back to eating VWG until I get the antibody tests. My doctor said 3g of gluten per day for 6 weeks. She gave me the prescription to get the antibodies test whenever I was ready to do so. 

So I found a meatloaf recipe with lots of spices and herbs to create color, texture, and strong flavors to hide the VWG. I made duplicate tupperwares of spice mix and two tupperwares of the challenge materials -- one with VWG and one with an equal amount of oat flour. A friend mixed the test materials and the spices, labeled the tupperwares #1 and #2, then I picked one to prepare the first meatloaf. So I didn't know what each container had the gluten, and he didn't know what tupperware I was eating from.  Double blinded as we could get. Everything was measured such that if I cut the meatloaf into 14 pieces, I'd have enough for two weeks and each containing 3g of VWG each. 

Yesterday the first two weeks ended. At first I took the meatloaf serving at night in case I had symptoms, then I switched to mornings. By the end of the first week -- constant headaches, angry mood swings, swollen body and heavy feeling, depression, low energy, brain fuzz, panicky heart-racing feeling with anxiety, along with bloating, gas pain, and occasional nausea. Minor changes in BMs. These are symptoms I had prior to going gluten free many years ago.

Yesterday I cracked and realized that I really didn't want to prolong this if I didn't have to. So I asked, and my friend revealed I was eating the gluten version of the meatloaf.

So for a few more weeks I'll continue eating the VWG mixed in with one of my meals, then I'll get the tests. I'll post the results. I don't know if my symptoms are celiac, I could develop more symptoms over time, and well... I just don't know what to expect! Either way, I'm glad I did this and that I went gluten-free years ago to rid myself of these symptoms. 

I might do 8 weeks total or more if I can tolerate it, to be absolutely sure enough time has passed for antibodies when I get tested. I can share more recipe and challenge details for anyone interested. My GI doc joked I could get a job doing this for her patients, haha!!

[RMJ]

Since you're a fellow scientist, here is a link to the paper that explores the kinetics of a gluten challenge.  See figure 2 for the antibody levels.  Looks like they go up somewhere between 2 and 4 weeks.

Open Original Shared Link

[Noobette]

It sounds like you're past the experimental phase, but just in case… did you use gluten-free oat flour in your "control" spice mix? If it wasn't gluten-free that could confound your results. 

[MelliF]

Noobette, sure did use gluten-free oats! I even had to test the oats alone before the test as they sometimes give me problems, probably due to fodmap. 

As an update, my symptoms became bad enough that we aborted the challenge. My colleague revealed I was eating the gluten! So I skipped the decoy sample to just get this over with. I'm not sure that my symptoms were celiac, but they were bad either way. Headaches, blurpy noisy gut, fatigue, fogginess, bloating, gas, pains. But those are vague, I'll find out for sure in a few more weeks. 

[MelliF]

Just got results - celiac antibodies were negative. As I expected

For anyone wondering on the "should I" aspect of a gluten challenge -- I'm glad I did it. I know the answer and it was worth the 6 weeks of symptoms. Granted, my symptoms were terribly severe, but totally worth it for me to just KNOW. 

Also, I have no plans to eat gluten in the future, I'll stay gluten free. The challenge was enough of a reminder of how it makes me feel. 

 

 

[SLLRunner]

4 hours ago, MelliF said:

Just got results - celiac antibodies were negative. As I expected

For anyone wondering on the "should I" aspect of a gluten challenge -- I'm glad I did it. I know the answer and it was worth the 6 weeks of symptoms. Granted, my symptoms were terribly severe, but totally worth it for me to just KNOW. 

Also, I have no plans to eat gluten in the future, I'll stay gluten free. The challenge was enough of a reminder of how it makes me feel.

@MelliF, thank you for sharing this. Considering how horrible you feel on gluten, and how much better you felt not eating it, could your tests have been a false negative? 

I am waiting for the results of my endoscope, but when I spoke to the GI doctor he said that gluten sensitivity has become an accepted diagnosis. If you are not celiac you seem very sensitive to it. 

[MelliF]

Hi SLLRunner, I'm happy with the results, not worried about a false negative. I was surprised at how I reacted, I've sometimes wondered if it was "in my head" all those years ago. But I tracked and graphed the symptoms, some rapidly went up at 3 days into the challenge. Happily I did the double-blind test, otherwise I'd still wonder if it was "in my head". Now I know -- it's not!

Good luck with your results!

[krosmon]

Have you considered that you might be intolerant to other ingredients in the foods you eat?  I found out I am extremely sensitive to xanthan gum and that is in almost everything.  I am also sensitive to soy.  Maltodextrin, natural flavors (none are natural but all chemical), carageenan, etc. etc.  I have to cross examine everything I eat for gluten as well as all the other stuff I just listed.  I get glutened with just one little bit.  Just a thought. 

[MelliF]

Hi krosmon, my diet right now excludes most all added ingredients. Prior to my gluten challenge I set a baseline for a few weeks with foods that were safe, well-tested, and highly tolerable for me. This let me track symptoms to focus on what is "normal" for me. I mostly eat the same foods all the time anyway due to my FODMAP and Specific Carbohydrate Diet restrictions. Essentially, when I started the challenge the only thing different was the vital wheat gluten or the oat flour (and I tested the oat flour prior to the challenge with no problems). I even tested the meatloaf recipe and the turkey before the challenge to be sure. 

Knowing I have gut sensitivities I avoid most all processed foods and do careful introductions of new foods. Probably like you, LOTS of label reading, avoiding unknown foods I don't know the source or content of, skipping most restaurants, and the like. But it's WORTH IT as I'm symptom free living this way. 

The conclusion from all this is that my vitamin deficiency was probably due to malabsorption, due to SIBO. The SCD type diet has done wonders for me!

Enjoy the discussion and considering all these options!