Gluten Free Challenge Day 57…

15 Sep

I started my gluten free challenge 57 days ago!  I spoke with my ally the day after posting my most recent blog post.  She was ready to get started right away, so I joined her. We agreed to cut out main sources of gluten rather than attempting the full-blown nit picky approach I dove into the first time. For example, oatmeal (though often contaminated with gluten) could be consumed this time around.  This was a welcome challenge for me.  This allowed me to be less neurotic about my food choices.  I focused on the big picture.  If I ate a sandwich, it would be on gluten free bread. If there were pastries around, I would choose fruit instead. This approach would not be practical for a person with celiac disease. A very strict approach is necessary. However, if fructan malabsorption was the main issue, this change would likely be sufficient to relieve symptoms (presuming other fructan sources, such as onion & garlic, are also removed).

My ally ended up following a stricter approach. For example, she swapped out her regular soy sauce with gluten free soy sauce.  Remarkably, after cutting out the regular soy sauce, she was able to detect a connection to her symptoms when she decided to test the borders by using the regular soy sauce again. My ally also ended up in the ER with severe abdominal pain after eating Saltine crackers (which she reintroduced just recently). This scare was sufficient to warrant further testing.

She had already received a negative test result after the standard tTG-IgA test. This blood test is estimated to be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. Notice the caveat there. I had also received a negative blood test result when first starting the deep investigation into my tummy troubles. My understanding at the time was that my blood test was negative, so I must be in the clear.  Unfortunately, this does not always prove to be the case. I can’t remember if I was eating gluten at the time of my testing, but my ally was definitely not eating enough gluten to trigger a positive result. She rarely ate gluten, because she struggles (as I do) to digest the fructans in wheat. The standard tests used to diagnose celiac disease generally require a person to still be eating gluten at the time of testing to receive an accurate result. Some people have such advanced cases that they will still have a positive blood test even after having cut gluten out for a period of time, but this is the exception and not the rule.

After the ER incident, my ally went through genetic testing. Her detailed history of symptoms combined with the strong genetic link suggested by her test results was significant enough for her doctor to diagnose her with celiac disease. To receive an official diagnosis, you generally have to confirm these results with an endoscopy/biopsy. However, for a person who has already benefited from cutting out gluten, it’s just not worth it to many folks to disregard what they’ve already learned and poison themselves for a few months with further gluten exposure just to be ABSOLUTELY positive that they in fact have full blown celiac disease. She’s opted to avoid the invasive procedure for now and start ridding her environment and diet of all known sources of gluten. She must purchase a new toaster and become EVEN MORE saavy at ingredient analysis.

Of course this means I must follow suit and have further testing done. My gut feeling is that I do not have it but am likely genetically predisposed to developing it. And oh by the way, you can develop celiac disease at any age. Even if you are not born with the disease, it’s no guarantee for life. Her gut feeling was that she had it. It’s always good to listen to your “gut”. The prevalence of celiac disease is estimated to occur in 1 out of every 133 healthy people. My ally is a second degree relative, bumping my risk up to 1 in 39! Yikes!

Have you read Jennifer’s Way yet? It’s a wonderful new memoir about a celebrity who struggles with celiac disease.  My ally read it and encouraged me to do the same.  My ally saw herself in a lot of Jennifer’s symptoms, which is where the whole gluten-free challenge idea came from.

It’s interesting to note that during the first 2 weeks of this gluten free challenge, I experienced  an unusual amount of  unprovoked/unexplained anxiety.  This was a similar experience noted by the author of Jennifer’s Way when she finally gave gluten the boot.  I’m not suggesting that this proves I have celiac’s disease.  I just think it’s noteworthy. It seems to at least suggest that my body noticed something was different, and that this change was significant enough to alter my symptoms.

One possibility could be that by cutting out gluten (a huge source of carbohydrates in many people’s diets), the overall carbohydrate load has been reduced enough to upset serotonin balance.  A common symptom experienced by newbie low carbers is an increase in anxiety due to this relationship. I may have upped my histamine intake simply by swapping out sandwiches for chili. High histamine levels are correlated with anxiety.  Finally, the phenomenon could be explained by some sort of exaggerated healing response by the body.  It’s common to feel worse before feeling better as your body tries to sort out what to do with itself now that it doesn’t have gluten to react to.

My ally felt significantly better while following a strict gluten free approach. For me, it was less clear. My stomach seemed to flare up at the start and then normalize more than usual a week or so after. I believe this to make perfect sense whether or not I have celiac disease. Fructans are a FODMAP. I malabsorb fructans. Therefore, removing a large source (wheat) of fructans from my diet was likely to offer some symptom relief.

Oh yea! I forgot to mention that I integrated additional challenges along the way for further clarification. For example, I gave up dairy for 10 days and processed oils, sugar, & caffeine for 7 days. While following a gluten-free, dairy-free, processed oil, sugar, & caffeine free diet, I felt the best. Boo! Of course, right?!

Since 2008, I started having strange tension headaches/migraines. I don’t know what to call them. The gist is that muscle tension will build up in my neck, back, & shoulders and become so horrendous that I am debilitated. I become nauseous & worthless as a human being. The only thing I can do to fix it is go to bed and sleep for several hours straight. As I’ve gotten older, this has progressed to sometimes needing 2 nights of a full night’s sleep before I feel normal again. It’s not a traditional tension headache, because those stem from your head and do not cause nausea. It’s not a traditional migraine, because I don’t get the searing pain on one side of my head or the crazy light sensitivity (hard to tell, because I’m generally pretty light sensitive anyway…). It feels like my whole body is having a migraine. Basically, I’ve claimed it my “weird neck thing”. When I tell my best friend or husband that I’m having my “weird neck thing” they know it’s code for, I may have to leave the party early to barf or go to bed. Tylenol rarely helps, Ibuprofen doesn’t touch it, & massage is often helpful but not enough to keep me going. A muscle relaxer is something that would likely prove effective, but these are only available by prescription, and I haven’t gotten around to asking a doctor about this yet.

There have been blissful periods of time where my “weird neck thing” has disappeared for months at time. During my year as a guinea pig, I had a significant reduction in these episodes. Even now, they occur less often that they used to in their prime. I used to have it just about EVERY weekend!  Woo college life! (Sarcasm) Removing gluten has not been sufficient enough to get rid of these bastards. I am almost always visited by these demons around menstruation. However, I happened to be following my super strict approach noted above (no sugar, dairy, etc) during my last period, and my body felt pretty damn good. Not to mention that the symptoms diary I have been keeping over the past 2 months showed a major improvement when I took things further than just removing gluten. My pain, sinuses, anxiety, etc. were all improved when I got serious about cutting out other common offenders. Sigh. We both know what this means…

Another Paleo challenge! My ally has already agreed to undergo a strict Paleo diet with me once she’s done some more research. Her doctor encouraged her to cut out as many potentially harmful foods as possible while her body attempts to heal the damage that’s been done by previous gluten exposure.

This has been the best and most rewarding elimination challenge yet. Because of our efforts, my ally learned that she has a condition in which eating gluten not only causes her stomach to revolt, but can contribute to cancer development and further autoimmune complications down the line.  Serious stuff! Knowledge is power, and I’m so grateful to have been a part of this revolution in her life.

I said this time would be different, didn’t I?

Sources:

http://www.uchospitals.edu/pdf/uch_007936.pdf

http://www.uchospitals.edu/pdf/uch_007937.pdf

http://www.mayoclinic.org/diseases-conditions/celiac-disease/basics/complications/con-20030410

http://celiacdisease.about.com/od/CeliacDiseaseTests/a/Why-Not-Get-Diagnosed-Celiac-Gluten-Sensitivity.htm

http://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/

http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/

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One Response to “Gluten Free Challenge Day 57…”

  1. Dad September 16, 2014 at 4:55 am #

    Wow. Really interesting. I feel bad what you are battling with. But you are educating others. Hang on there.

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