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Does This Sound Like Gluten Intolerance Or Celiac Disease?


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4 replies to this topic

#1 Yumeji

 
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Posted 24 June 2012 - 05:26 AM

In February I decided to finally seek medical attention for symptoms I've been dealing with life long (i.e., bloating, constipation, flatulence, chronic fatigue). However, it wasn't until this year I began to get pains in my abdomen. Initially, the lower left quadrant then later the left flank. The pains seemed to coincide with the foods I ate, specifically how indigestible they were (i.e., nuts, raw vegetables, bran cereal). The first doctor was quick to suspect a food intolerance, specifically wheat and lactose, based on my history and family history. When I was younger I often had GI upset with diary products and the same symptoms are shared with one of my older siblings. So, I was told to stop eating wheat and simply use Lactaid drops from then on. In addition, he scheduled me to see an allergist in April.

After seeing the allergist, I tested negative for any allergies and was sent off for blood work (IgE, TTG, etc.) along with stool, urinalysis, and a couple breath tests (H. Pylori and lactose). Unfortunately, I had been off the wheat for a couple months by then and my test results were all negative. I was advised that I probably "just had IBS" and could see a GI specialist in July. Since the pain in my abdomen had continued, my boyfriend advised me to seek a second opinion from his GP. Unfortunately, his GP's diagnosis was that my symptoms were entirely psychosomatic and I just needed to eat more All Bran, Metamucil, and Dulcolax. Suffice to say, one day of this recommendation was the worst experience ever. It felt like shards of glass cutting through my intestines along with bloating from the fiber supplement (fermentable fiber).

Searching for answers, I began to read up on IBS (i.e., Heather Van Vorous books, FODMAP diet, FructMal) and it seemed like nothing was working. Sometimes my symptoms improved, other times it worsened. It wasn't until I ran out of oatmeal that I noticed a change--I began to feel full after my meals. Typically after every meal I still feel hungry for some reason, despite consuming hundreds to thousands of calories each meal. I never seem to gain weight (5'3 and <120 lbs); however, I do quickly bloat and retain water for a few days. So I began to connect the dots thinking that the reason why I've always felt hungry and bloat after every meal was perhaps due to malabsorption in the small intestines. Testing to see whether my initial lactose breath test was accurate, I drank 1 cup of skim milk and quickly experienced diarrhea and bloating (and later flatulence). However, according to the initial breath test, I'm not lactose intolerant.

So I decided to ignore all the initial tests and cut out -all- gluten (including oats), and big surprise, I'm feeling so much better! I can actually tell when I've eaten gluten (including cross contamination) because I've become more aware of my symptoms (i.e., fatigue, nausea, bloating, unsatisfied hunger pangs, brain fog/zoning out). Reading more about Celiac, I see that other symptoms I had may or may not be related:

Mysterious bruising on the body (i.e., legs, arms, stomach)
Raccoon eyes
Bleeding gums (despite brushing at least 2x/day)
Shortest in my family (I'm 5'3 while my sisters are 5'6, 5'9, and dad is 6')
Sticky, floating pale stools
Joint/bone pain (prevents sleeping at night)
Cold hands and feet (intolerance to cold)
Rumbling loud stomach
Extreme fatigue (14-16 h/day)
Panic attacks/anxiety (diagnosed)
Asperger's Syndrome (diagnosed, autism spectrum disorder)

Along with my family history:
Two older siblings, twins, with autism (one is anemic, other can't eat gluten/lactose/some fructose)
Father with Type 2 diabetes and GI problems
Paternal aunt with Ulcerative Colitis
Paternal uncle with Crohn's disease
Cousin with peptic ulcers, and "IBS-like" symptoms
Great aunt with GI problems (people assumed she had an eating disorder)

Knowing all of this, would I fall under gluten intolerance or Celiac? I wasn't aware that a food intolerance could -cause- malabsorption for other molecules (i.e. lactose intolerance, Vitamin K). However, my symptoms don't seem severe enough for Celiac (no autoimmune diseases I'm aware of yet). The difference to me is knowing whether I'm harming my body if I cheat or unintentionally consume gluten. I've also read there may be a correlation between Celiac and IBD which frightens me because of my family history and the chronic pain in my lower left abdomen the past few months (worst when I eat foods that are "rough"). I've noticed I do better on a low-fiber diet to reduce the pain which is typically recommended to patients with IBD during a "flare."

I apologize for the long, tedious post. It's been a long journey and I worry I won't get the answers I'm looking for from the GI in July (perhaps he'll also classify it as psychosomatic or IBS). I don't plan to get a biopsy as I start University in September and can't afford to get sick then, and I don't feel comfortable with invasive procedures (i.e., colonoscopy, endoscopy, sigmoidoscopy, barium enema) unless it's a PillCam. Besides, I doubt the vili would be blunted after drastically reducing my gluten intake the past 4 months.
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#2 adab8ca

 
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Posted 24 June 2012 - 06:04 AM

Yikes. I had so many of these:
Mysterious bruising on the body (i.e., legs, arms, stomach)
Raccoon eyes
Sticky, floating pale stools
Joint/bone pain (prevents sleeping at night)- this was HORRENDOUS
Cold hands and feet (intolerance to cold)
Extreme fatigue (14-16 h/day)
Panic attacks/anxiety (diagnosed)

It's hard to say where you may fall in the spectrum. Some Celiacs have negative blood work and positive biopsies, some have positive blood and negative biopsies, some people have neither but heal on a no-gluten diet.

If not eating gluten makes you feel better, then I say go for it, especially if you have no intention of getting the endoscopy done.
Good luck!
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#3 1desperateladysaved

 
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Posted 24 June 2012 - 07:40 AM

I have been wheat free for a long time. This post just reminded my that the times I went to Subway I felt like my "food" was a brick in my tummy. When it was time for the next meal; I felt as if I had just eaten.

Do others feel as if your body doesn't break down the food if gluten is in it?

Gross, but true.

No wonder our bodies get goofed up. I remember a time during my pregnancies in which I could vomit hours after eating and it would come up looking unchanged. When I mentioned it to doctors they would say that is good, atleast some is getting in. Was it?. Well, I am still here.
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#4 sk26

 
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Posted 24 June 2012 - 07:41 AM

I had a lot of the same neurological symptoms as you. I used to have constant brain fog, excessive sleepiness, lack of concentration, along with being easily overloaded by sensory stimuli. I'm an OT and I'm convinced there is a link with food allergies/intolerance with people diagnosed with Autism.

However, I noticed a significant difference in my daily life interactions once being on a gluten free diet. It's amazing. I am less anxious, more able to tolerate excessive auditory/ visual stimuli, my concentration and memory have improved, and my ADD is no more.

You know your body better than anyone else. If being gluten free works, stick with it. Good luck!
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#5 MitziG

 
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Posted 24 June 2012 - 10:57 AM

Honestly, it could be either, and without testing you can't know for sure. If you really want a better idea, you could do genetic testing to see if you have the genes for Celiac. If so, it would probably be safe to say it is Celiac.

Personally, I would treat it as celiac disease and be vigilantly gluten-free for life. Clearly, gluten is harming your body, whether it is causing an autoimmune response yet or not.
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