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What Were Your Symptoms At Diagnosis?


elaine33

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elaine33 Apprentice

It seems most of my reading about celiac disease indicates a major weight loss. My son has no problem with weight gain, but he has asthma, fatigue, crankiness, extreme tummy pains and gas with whole wheat. I haven't decided if I am going to proceed with testing/biopsy or just the elimination diet, yet.

My symptoms are more neurologic. When I was at my worst, I lost a significant amount of weight, but now that they have me all hopped up on anxiety meds and beta blockers, I have put the weight back on.

I'm thinking because of the not losing weight we are probably gluten intolerant. Actually, leaky gut makes me intolerant of lots of things.


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Ursa Major Collaborator

You know, much of the literature on celiac disease still claims that in order to be considered for celiac disease you have to have diarrhea and be losing a lot of weight. But those are only two of the possible symptoms of celiac disease. Two other possible symptoms are constipation and weight gain, the exact opposite of the first two. The majority of doctors are still ignorant on most of the possible celiac disease symptoms.

The things you mention, asthma, fatigue, crankiness, extreme tummy pains and gas with whole wheat, are also all possible celiac disease symptoms. Some people have diarrhea and weight loss, and many don't. If your son is still eating gluten foods, you may want to consider testing as soon as possible.

Of course, the easiest and fastest way of finding out if he will improve on a gluten-free diet, is to just try it. Unfortunately, that will make the testing through blood and biopsy impossible, but would still leave the Enterolab route.

jayhawkmom Enthusiast

My daughter could not gain weight. At a month before her 5th birthday, she was hovering around 29 lbs. I could not lose weight. I had a baby on 8.24.05 and just kept holding right on to that baby weight.

Immediately after going gluten-free, my daughter started gaining, and growing. She's gained 5 lbs and grown 3 inches since June.

I'm starting to *finally* lose weight!!

Both myself and my daughter had questionable blood test results. Extremely high IgG levels, high "normal" levels of everything else. She had damage to her intestines, ulcerations, mucous, redness, and irritation. But, no noted villi damage. So, she's considered gluten intolerant. Though, he GI said we probably "caught it."

I was dx with GERD, I have a hiatal hernia, and scarring in my esophagus from long term, untreated, reflux. I also had redness and irritation in the duodenum but no obvious villi damage. So, I too am considered "gluten intolerant."

2Boys4Me Enthusiast

Ty had VERY low iron levels. And irritability, but I'm not sure if that's personality or gluten. He's been gluten-free for a year and can still be pretty darn crabby.

Oops. Edited to say: he was diagnosed via biopsy. "Severe villous atrophy consistent with Celiac Disease."

nikki-uk Enthusiast

My son had a positive biopsy for celiac disease a couple of weeks ago.

He was in the norm for height and weight. He didn't have diarrhoea - more loose stools , but no more than once or twice a day.Very rarely complained of tummy aches.

His biggest symptom was bone pain and achey joints.

My hubby (also biopsy dx'd coeliac) did lose some weight but he was a low weight all his life.

He too didn't have diarrhoea.

His biggest symptoms were crippling fatigue,joint pain, constant dull burning in his stomach.

Just to confuse matters my hubby had negative bloods but positive biopsy! :huh:

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    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
    • pothosqueen
      I was just diagnosed at 26 after accidental finding. Any simple tips for newbies? Things a non celiac would never think of? I already went through my prescriptions and identified some medications that have gluten. Is there a beginners guide? Celiac for dummies?
    • trents
      Would it be rude to ask your age?
    • pothosqueen
      Wow! Thank you @trents I  really appreciate the responses. This line of diagnosis has me questioning a lot of symptoms over the course of my life. Very validating and very much a bummer at the same time. 
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