WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, March 7, 2012

More Gluten.....

A while back we had gone gluten free here for about 6-9 months. After seeing no improvement at the time, we gave up.

Since then, Abby has developed a lengthy list of GI issues. So, by chance I have been reading up again about gluten and GI and read that you can develop celiac at any point in your life. A surprising number of senior citizens are developing gluten sensitivity and celiac.

This lead me back to wondering if maybe Abby does have Celiac? She has had blood work in the past which apparently is not that accurate. Friday they will biopsy, and we will know for sure. Celiac sure would explain a lot, and though I don't wish it on anyone, it would be amazing to know that something other then her Depletion is responsible for a bunch of different health issues. We are champs at eliminating allergens around here and totally comfortable living a gluten free lifestyle-frankly, it would not hurt any of us. Even though we were gluten free for 6+ months, it is possible that her gut is so damaged that 6 months wasn't enough to show improvement.. or she simply did not have celiac at the time? But, it seems that there is a gene for Celiac so wouldn't you always have it? Can it be in remission? Can it be triggered?

Last week I was reading a few blogs where celiac patients also had secondary fsgs due to their celiac disease! Wow.. when we started the journey down Abby's kidney issues, I kept trying to connect her allergies to her kidneys, and couldn't.. but maybe...

Another interesting tidbit was that often people with celiac don't tolerate soy or dairy, the proteins are all similar enough that the body sees the dairy and soy proteins like gluten. Abby has never tolerated soy and dairy. Some times her skin testing showed them as an allergy, and other years no or little allergic response.

I am on a constant journey to find something other then the Depletion to blame and hopefully treat for Abby. On one hand, it is a great thing to make sure she has not been misdiagnosed yet again(diagnosis number 4, which we have been assured is absolute, but what is truly absolute these days?) on another hand,if it isn't celiac I wonder if I can finally accept that "absolute" depletion diagnosis? We are accepting it a bit more as the weeks go on, but we still think there are horses around that need looking at vs only seeing that one zebra! At this point I "get" that she has a depletion and there is nothing I can do about it, but if she had other secondary issues that were treatable it might explain the progression this last couple years- it would be so amazing and hopeful to blame something other then her Depletion.

Celiac Disease Symptoms-

People with celiac disease often have general gastric complaints, such as intermittent diarrhea, abdominal pain and bloating. Some people with celiac disease, however, suffer no gastrointestinal discomfort at all.

To make matters of diagnosing celiac disease even more challenging, celiac symptoms can also mimic symptoms of other conditions, such as Anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions.

It is not uncommon for celiac disease to present itself with symptoms that are far more vague. Such symptoms can include: dental and bone disorders (such as osteoporosis), depression, irritability, joint pain, mouth sores, muscle cramps, skin rash, stomach discomfort, and even tingling in the legs and feet (neuropathy).

Celiac disease results in malabsorption of nutrients.

Depending on the degree of malabsorption, the signs and symptoms of celiac disease vary among individuals, ranging from no symptoms, few or mild signs and symptoms, to many or severe signs and symptoms. There are two categories of signs and symptoms:

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

She has a lot of symptoms- where if I filled out the same format for Mitochondrial Depletion she has very few that match. Of course, a thousand other issues can cause these same issues- but I found it interesting. Also, any of the known Depletion causing nDNA mutations have been ruled out for Abby, so she has her own variety- meaning she is the symptom list!! LOL Had I filled out this format 2 years ago when we went gluten free she did not have near as many of the symptoms.

Now here is a list of conditions associated with Celiac-

Conditions and Disorders Associated with Celiac Disease:
Addison’s Disease and Celiac Disease
Anemia and Celiac Disease
Arthritis and Celiac Disease
Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
Attention Deficit Disorder and Celiac Disease
Autism and Celiac Disease
Bacterial Overgrowth and Celiac Disease
Cancer, Lymphoma and Celiac Disease
Candida Albicans and Celiac Disease
Casein / Cows Milk Intolerance and Celiac Disease
Chronic Fatigue Syndrome and Celiac Disease
Cognitive Impairment and Celiac Disease
Crohn's Disease and Celiac Disease
Depression and Celiac Disease
Diabetes and Celiac Disease
Down Syndrome and Celiac Disease
Dyspepsia, Acid Reflux and Celiac Disease
Epilepsy and Celiac Disease
Fertility, Pregnancy, Miscarriage and Celiac Disease
Fibromyalgia and Celiac Disease
Flatulence (Gas) and Celiac Disease
Gall Bladder Disease and Celiac Disease
Gastrointestinal Bleeding and Celiac Disease
Growth Hormone Deficiency and Celiac Disease
Heart Failure and Celiac Disease
Infertility, Impotency and Celiac Disease
Inflammatory Bowel Disease and Celiac Disease
Intestinal Permeability and Celiac Disease
Irritable Bowel Syndrome and Celiac Disease
Kidney Disease and Celiac Disease
Liver Disease and Celiac Disease
Malnutrition, Body Mass Index and Celiac Disease
Migraine Headaches and Celiac Disease
Multiple Sclerosis and Celiac Disease
Obesity, Overweight & Celiac Disease
Osteoporosis, Osteomalacia, Bone Density and Celiac Disease
Psoriasis and Celiac Disease
Refractory Celiac Disease & Collagenous Sprue
Sarcoidosis and Celiac Disease
Schizophrenia / Mental Problems and Celiac Disease
Sepsis and Celiac Disease
Sjogrens Syndrome and Celiac Disease
Skin Problems and Celiac Disease
Thrombocytopenic Purpura and Celiac Disease
Thyroid & Pancreatic Disorders and Celiac Disease
Tuberculosis and Celiac Disease
Lastly, Dermatitis herpetiformis is an itchy, blistering skin disease that also associated with gluten intolerance. Rashes usually occurs on the elbows, knees and buttocks. dermatitis herpetiformis can also cause significant intestinal damage identical to that of celiac disease. However, people who suffer from dermatitis herpetiformis may also be entirely free of noticeable digestive symptoms.

I am hoping the scope friday will at least rule out a few more things. The GI has had patients in far worse condition caused by very treatable and garden variety issues. Of course, we know that odds are, with Abby it won't be something garden variety- but wouldn't it be amazing if they found something we could actually treat,cure, stop etc? Whether they find something or not Friday, it will be diagnostic- they will find something or rule out a bunch and we can move on. Even if Celiac is ruled out, we might still go completely gluten free. I usually buy gluten free when I can but a few gluten items get in the house.


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