Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can I Have Your Opinion?


Guest danceintheflames

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

check their website:

Open Original Shared Link

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.