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Can I Have Your Opinion?


Guest danceintheflames

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Guest danceintheflames

I feel pathetic even posting this, but I would love some feedback. I've only recently been diagnosed with Celiac Disease after years of "unexplained" pain and ER visits that made me start to feel insane. While searching through support groups, I found someone who had mentioned that a relative of theirs received a wish from Make-A-Wish due to having the disease. I'm seventeen years old, so I almost feel like I need to "grow up" and abandon the idea, but I secretly think it would be amazing to get away and just relax for some time. Here is what else has been going on for me health-wise:

At age five, I was diagnosed with petit maul seizures. No one has witnessed me having a seizure for nearly two years and my last EEG didn't catch any seizures, but my brain waves were still irregular, hinting at the presence of epilepsy.

I have two bulging discs in my lower back from a car accident when I was twelve.

I continually get sinus infections, to the point where surgery has been considered by my ENT doctor.

I have had repeated cases of mesenteric adenitis (a swelling of the lymph nodes in the abdomen). This mimics appendicitis in the location and severity of pain. I have had it three times so far this year. It is viral, and nothing can be done to treat or cure it, other than giving it time.

I frequently get migraines (associated with the epilepsy).

I have had several kidney stones, though this may be the fault of the Celiac.

Partially due to all the illnesses and absences from school/worrying about being a selfish person/worrying about being a failure/worrying about being a burden, I have clinical depression and an anxiety/panic disorder which require medication/a psychiatrist and a psychologist.

My question is: Is this enough to qualify my for a wish? I know that UNTREATED celiac is life threatening but would a doctor actually sign off on it, and if so, would the wish foundation consider me worthy? I feel like I have not suffered that much when compared to others. In fact, this whole situation makes me feel guilty, whiny, and selfish, but I wanted some input from others.


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kareng Grand Master

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Who is eligible?

A child with a life-threatening medical condition who has reached the age of 2

GlutenFreeKate Newbie

Not to sound like a downer, because you have had quite a rough time with your medical history, but I would think long and hard before applying for a Wish. The program, as I've understood it, is for children with fatal illnesses (usually cancer, leukemia, etc.) While Celiac IS a difficult lifestyle to adjust to, I would not place it even close to the ballpark of Make a Wish diseases. Having been diagnosed at age 11 and coping with Celiac for almost a decade, I can say that it does get easier, you do feel better, and things will seem brighter, without taking a Wish from a terminally ill patient.

Guest danceintheflames

Not to sound like a downer, because you have had quite a rough time with your medical history, but I would think long and hard before applying for a Wish. The program, as I've understood it, is for children with fatal illnesses (usually cancer, leukemia, etc.) While Celiac IS a difficult lifestyle to adjust to, I would not place it even close to the ballpark of Make a Wish diseases. Having been diagnosed at age 11 and coping with Celiac for almost a decade, I can say that it does get easier, you do feel better, and things will seem brighter, without taking a Wish from a terminally ill patient.

I definitely understand what you are saying. In fact, the Celiac is not the actual reason I would present. It is more the epilepsy and other illnesses, not all of which were mentioned in the post. Also, by the time the celiac was diagnosed (a month ago) it had already been causing a lot of damage for seventeen years. Again, though, this was my main concern of not actually having suffered enough. Make A Wish is actually states that there are many people who go on to live long lives after wishes, because of the fact that their illness was life-threatening, but not terminal. Regardless, I would not, as you put it want to "take a wish away from a terminally ill patient", so the idea has mostly been abandoned.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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