Sunday, January 27, 2013

Celiac Disease

Our youngest child was very different from the older two right from birth. Her hair was dark and curly and her skin was dark red. Quite a contrast from the pale skin blondes that were the older two. She was little too. Weighing a couple pounds less at birth than her siblings.  She grew at a normal rate until we introduced her to food other than formula. Her weight plateaued and then started to decline.

She started having digestive issues that resulted in explosive bowel movements of steatorrhea at around six months of age. She was famished and would consume very large amounts of food. As time moved on she became withdrawn and listless. She was highly irritable and would burst into a screaming fit if someone other than RLB or I tried to hold her.

Our pediatrician was stumped. He tested her blood and saw markers of her declining health. He tested her for Cystic Fibrosis, which was negative, and encouraged us to load her up with crackers coated in butter. He also became suspicious of us. He listed her with the condition of "failure to thrive" in her records. Though it didn't happen to us, we know of other couples who were visited by social workers after a doctor wrote as much in their child's records.

Thankfully we had the internet and were able to look up her symptoms. For the first time ever we came across Celiac Disease. The auto immune disorder that attacks the body upon consumption of gluten.

She was thirteen months old and emaciated weighing only thirteen pounds. Knowing she was dying and no longer trusting her doctor, I asked him if we could have a referral to a pediatric gastroenterologist. The man who saved her life was from Hungary. The five of us were sitting in his office when he walked in, took one look at our daughter and said these exact words in his thick Hungarian accent, "Ah, I see we have a Celiac here."  

I asked him how he could possibly know that by just looking at her. He told us he looked at the rest of us, saw healthy bodies and looked at her with her bulging stomach and frail, skinny, limbs. He ordered up antibody blood tests. They came back inconclusive. This didn't deter him, he scheduled her small bowel biopsy (the former gold standard of Celiac diagnosis) and confirmed without question that she suffered complete villous atrophy. Not only were the villi in her intestines damaged, they were non existent. The pictures showed a shiny glass like intestine with residues of unabsorbed milk remaining from her last feeding. 

The treatment: strict adherence to a gluten free diet. Essential for this: a stay at home mommy that can commit every waking moment to restoring her child's health. We've had a hand full of mistakes and thankfully our daughter is a very sensitive Celiac. Her body reacts to gluten like it's food poisoning. After about three hours of exposure she vomits profusely until it is out of her system. Not every Celiac is as sensitive, allowing trace amounts of gluten to go undetected by physical symptoms yet damaging the gut and causing a myriad of other problems, the worst being various cancers. 

Shortly after our daughter was diagnosed, we learned of a man RLB's parents knew who wasn't fortunate with an early enough diagnosis. Though he changed his diet the damage had already been done. He died six months after diagnosis of cancer.

The gluten free diet has become very popular today. I must strongly caution you, however. The prevalence of Celiac disease is 1 in 133. Before going on a gluten free diet, find out first if you have Celiac disease. It is the cause of hundreds of symptoms, disorders and diseases. Knowing whether you have it or not will determine how strict you are with your diet. It is quite dangerous to go on a partially gluten free diet, feeling better, while still consuming trace amounts of gluten. Your body will still be reacting to the gluten though you feel no physical symptoms of it. Also, you need gluten present in your digestive system in order to get a confirmed diagnosis. 

I am so excited about the new research coming out about the disease. I just stumbled upon this while writing my post and am anxious to do more research into it: 

We're still learning. We have been previously told that the gluten responsible for Celiac is only found  in wheat (and it's close cousins), barley, and rye. We'd been told that oats, grown in designated fields to eliminate contamination at the harvesting level are safe for Celiacs. I purchased some Gluten Free oats and made some cookies yesterday. I only allowed our daughter to have a small amount since this would be the first introduction of oats into her diet. Three hours later the poor girl was retching and then vomiting. Oats are forever off the list of safe foods.

And for you conspiracy theorists out there, I have no qualms about saying I believe a Celiac diagnosis is a financial detriment to pharmaceutical companies. It will not be something money hungry doctors who forget their oath in exchange for lined pockets will seek as a first diagnosis to rule out for your ailments. Please review the following list. If you find your ailment, get tested for Celiac and don't take no for an answer from your doctor.
Signs and Symptoms of Malabsorption, Malnutrition, Vitamin and/or Mineral Deficiencies Associated with Celiac Disease:

  • Abdominal cramps, gas and bloating
  • Anemia
  • Borborygmi (stomach rumbling)
  • Coetaneous bleeding
  • Diarrhea
  • Easy bruising
  • Epistaxis (nose bleeding)
  • Failure to thrive
  • Fatigue or general weakness
  • Flatulence
  • Fluid retention
  • Foul-smelling or grayish stools that are often fatty or oily
  • Gastrointestinal symptoms
  • Gastrointestinal hemorrhage
  • Hematuria (red urine)
  • Hypocalcaemia/ hypomagnesaemia
  • Infertility
  • Iron deficiency anemia
  • lymphocytic gastritis
  • Muscle weakness
  • Muscle wasting
  • Nausea
  • No obvious physical symptoms (just fatigue, overall not feeling well)
  • Osteoporosis
  • Pallor (unhealthy pale appearance)
  • Panic Attacks
  • Peripheral neuropathy (nerve damage)
  • Stunted growth in children
  • Vertigo
  • Vitamin B12 deficiency
  • Vitamin D deficiency
  • Vitamin K deficiency
  • Vomiting
  • Voracious appetite
  • Weight loss
  • Obesity

Conditions and Disorders Associated with Celiac Disease:


  1. I'm very interested to know from my European readers, is Celiac disease a routine test for children there? I've heard before that it was and am curious if someone can confirm as much.

  2. @SarahsDaughter -- I know people with celiac, who went round and round for years before getting a proper diagnosis. Everything from "you're hypochondriac" to "clinical depression" to...well, you name it.
    As an aside, you might want to consult the works and webpages of Dr. Ritchie Shoemaker, an MD from the East Coast (MD from Duke University) who spent years treating people with odd ailments: he found a common thread was exposure to mold toxins -- which can, among other things, induce celiac.

  3. I will look into that. I'm not unfamiliar with what mold exposure can do. The beautiful girl in this article: is an old friend. It took everything from her life. Last I heard, ten years ago, she is still confined to her mother's home suffering severe neurological disorders.

    I wasn't aware of this: "the genes for celiac disease/gluten intolerance have a significant overlap with the mold genotypes" - thank you for bringing this to my attention.

  4. It is not a routine test done here. A good friend of ours has a daughter with CD. She went through hell and back to get her diagnosed and basically did what you did - she was diagnosed when she was 4 or so IIRC. That being said, one of mine had her weight plateau at around 6 months, but was gaining length and her pediatrician did the blood test just in case. She doesn't have it, but I know that pediatrician is one of the best and he always liked to err on the side of caution.

  5. It is so great when you have a good doctor. Moving around as we do and the nature of the military health care, our primary care managers are always changing. We have our daughter's antibody levels tested every year to make sure she's not getting any hidden gluten. When I requested the test from the last doctor she had he said, "she doesn't have Celiac, her antibody levels have been fine according to her records." - And there I go again having to educate another doctor. I finally told him that either he will order the test or I will go off Post and pay for it to be done from a civilian lab.

    What fun Obama Care will be here.

  6. @SarahsDaughter on January 27, 2013 at 11:02 AM --

    Last I heard, ten years ago, she is still confined to her mother's home suffering severe neurological disorders.

    I implore, I *beg* you to research the following site for this girl:

    explains the havoc which toxins can wreak on the body's innate immune system and on cytokines (short-lived inter- and intra- cellular chemical messengers)

    Try to find his books at the public library or through interlibrary loan, if you cannot afford them.

    He has a very specific diagnosis and treatment protocol which has both accuracy and specificity for nerve-related toxins, and an impressive *clinical* record. He is retiring due to high blood pressure or similar, and is putting information out to try to educate other physicians.

    Best Wishes & Godspeed

  7. Thank you grey_whiskers, I found her mother's website and emailed a note to her that included those links.

    1. Update: I received an email response from her mother who passed on her email so we may remain in touch. I sent her those links as well. Her health problems are still very severe and she'll be going to the Mayo clinic soon.

    2. I live in Minnesota, so I'm very big on the Mayo clinic. I know someone whose Celiac was diagnosed by one of the specialists there. :-)
      Saying a prayer for the daughter; let me know if there is anything else I can do.

  8. @SD

    I'm very interested to know from my European readers, is Celiac disease a routine test for children there? I've heard before that it was and am curious if someone can confirm as much.

    I don't know about the tests, but it's certainly very well known here (I know a sufferer myself). ...And the following really surprised me:

    Thankfully we had the internet and were able to look up her symptoms. For the first time ever we came across Celiac Disease. The auto immune disorder that attacks the body upon consumption of gluten.

    As I say, people are quite familiar with it in the UK: perhaps we have more problems with gluten than Americans do... :(

  9. This was ten years ago. It is something that most Americans have at least heard of today (I think ?).

    It is most common for those of European ancestry and is rare in people of African or Asian ancestry.

    Why it has taken so long for awareness to spread in the United States...again, this thought process makes me entertain too many conspiracy theories. How dare illnesses exist that only require dietary change...there's no money in that.

  10. Ah, I see: it sounded as though it was recent!

    And I steer clear of pharmaceuticals as far as is humanly possible. ...And there's no way I'd ever take SSRIs or any psychotropics: that's what's to blame for all these shootings and suicides. Not guns. It'll be a cold day in Hell before that truth comes out, though.

  11. I like what Mark Sisson said about grains:
    "By themselves, grains are just beige blob that don't taste that great," he says. "They're just a cheap source of calories that converts to glucose. Gluten is poison."

    Quoted here:

    Or this quote I liked:
    "Apart from maintaining social conventions in certain situations and obtaining cheap sugar calories, there is absolutely no reason to eat grains."

    The standard American diet is high on grains and vegetable oils and HFCS, whilst obesity, high blood pressure and diabetes rates contuniue upwards.

    Paleo thinking suggests grains are mostly unnecessary, regardless of symptoms pr lack thereof.

    List of related articles here:

    Grains are basically a convenience food that spike insulin levels and eventually contribute to major health issues. Celiacs are probably just more reactive than average people.

    PS I have no financial interest in plugging his site.

    - an observer

  12. Thank you an observer, I like Marks daily apple, I purchased The Primal Blueprint when I started my eating Paleo. Great stuff on his site. I really need to spend more time reading through what's there.

  13. I like the Friday success stories. They are not (always) about who can get the most ripped, it is amazing to read about the change in peoples lives.

    - an observer

  14. SD
    My mother had severe health problems for most of her adult life. She was finally diagnosed at age 50 with Celiac disease and dermatitis herpetiformis. Unfortunately, her health was so severely damaged by that point that she only lived five more years after being diagnosed.

    Thanks be to God that you have figured out your daughter's diagnosis early.

    - Sunshine Mary

    1. SSM, this just breaks my heart. I'm so sorry she had to go through all of that when the answer to her health challenges was a simple dietary change. She was so young too, my condolences, hon.

      Have you gotten tested? I've heard those of us related to Celiacs have a 1 in 20 chance of having it or having it onset.

      We were very fortunate our daughter was so symptomatic. Though her GI doctor told us she didn't have much time left when we finally got the diagnosis. She was becoming severely dehydrated and malnourished. After just a weak of eating Gluten Free her behavior started to change. It took six months to reintroduce dairy to her diet because of her compromised gut. But now, with the exception to oats, she can eat anything that's GF.

    2. @ SarahsDaughter o January 30, 2013 at 1:31 PM --

      After just a weak of eating Gluten Free her behavior started to change. It took six months to reintroduce dairy to her diet because of her compromised gut. But now, with the exception to oats, she can eat anything that's GF.

      You may want to consider discussing this with your GI doctor, but have you thought about supplementing her diet with the amino acid glutamine? As it turns out glutamine is a major component of muscle protein and is also found in the intestinal mucosa: in fact, studies have been done which show that high-end weightlifters' muscles will *steal* glutamine from the intestinal lining to convert to fuel during intense workouts.

      The point being, glutamine may help her villi rebuild.

      Full disclosure: I'm a PhD, not an MD -- check with your doctor for confirmation, or at least send them some money. ;-)

      Here's a link or two:

  15. You know, that is a great idea. I take glutamine after I lift so we already have it. We actually bought it first when RLB returned from Africa with a parasite or something in his gut. He had severe problems too from the doxycycline to prevent malaria. He fought candida for months. So I can see how the glutamine would help her and never thought of it. Thank you!

  16. @SarahsDaughter --
    Yr. obdt. srvt.,

  17. red-headed step-childFebruary 14, 2013 at 3:04 PM

    Good information. My oldest had a blood test come back with markers for celiac, but the biopsy was negative. He has seemed fine otherwise. I've considered trying a gluten free diet with the family just to see how it would go over, but the task seems daunting for a family my size (9 people).


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