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Second Opinions Please?


annonymous:)

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annonymous:) Newbie

So, i am 16 and have been having "tummy problems" my whole life. Recently (within the last year, and specifically that last couple months)my symptoms have gotten progressively worse. I have been researching possibilities and celiac seems to me like the one that fits the most but i would really appreciate another opinion to convince myself i am not crazy :)

My symptoms are...

-stomach pain/discomfort/cramping (pretty much all the time especially after eating certain foods)

-bloating and gas

-occasional diarrhea/vomiting

-feeling wierdly faint (like the room is spinning)

-random occasional muscle cramps

-reflux and indegestion pretty frequently

-shortness of breath (feeling like i cant get enough air in each breath)

When i was a baby I had problems with dairy but I could still tolerate small amounts and highly saturated ones (like ice cream and pizza, small amounts of cheese etc.) about a year ago i started to gradually feel worse after eating those previously okay things and now i eat little to no dairy ever. But i am still feeling bad, I have really disliked eating because most of the time it makes me feel sick and so i started researching and after hearing about all this gluten stuff i think it might be the culprit. SO i have a doctors appointment next week and as i have heard many doctors are pretty unknowledgeable so i wanted to hear from some personal experts what they think before i talk with the doctor.

thanks


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eatmeat4good Enthusiast

You are very smart to look at the possibility of gluten.

Your list of symptoms just as you described here should cause the Dr. to think about testing you for Celiac. But if it doesn't, you can ask for a full Celiac panel after you give them the list of symptoms.

Unfortunately, it is a crap shoot if you will get a Dr. who knows about Celiac or not.

I'm glad you know that going in.

But the good news is, if they don't want to test you and you feel better being gluten free, you can go ahead and do it on your own.

It depends how bad you want the tests.

Maybe your parents can help persuade the Dr. to test you. Are they in agreement with you?

You are light years ahead of your time figuring all this out at 16. I'm very impressed! :);)

ecf Rookie

Way to be so proactive. It is definitely good to get the ball rolling with a doctor to get to the root of your tummy troubles.

A couple of ideas: if there is a center specializing in Celiac Disease at a hospital near you, get an appointment there. Those doctors will be very well versed in the disease and, given your symptoms, you shouldn't have any trouble getting a Celiac Panel through them. There are clinics in New York, Chicago, Boston, Philly, etc.

If you can't get to one of those centers, the next best thing would be to see a Gastroenterologist, who would also hopefully go through other possibilities like Crohn's Disease.

Also, I would be cautious about going gluten free without getting tested for Celiac first. If the first doctor doesn't want to test you, see find someone else who does. You've probably come across this in your research, but if you go gluten free, your endoscopy results will always come back negative for Celiac, even if you really do have the disease, because gluten is no longer damaging your intestines. It is possible to test negative for Celiac Disease but still be gluten intolerant, but it's definitely important to have accurate test results and know which you are - for peace of mind, but also to know if others in your family should be tested for Celiac.

I hope this helps - good luck with the doctor!

  • 1 month later...
MichaelJacksons#1Fan Newbie

So, i am 16 and have been having "tummy problems" my whole life. Recently (within the last year, and specifically that last couple months)my symptoms have gotten progressively worse. I have been researching possibilities and celiac seems to me like the one that fits the most but i would really appreciate another opinion to convince myself i am not crazy :)

My symptoms are...

-stomach pain/discomfort/cramping (pretty much all the time especially after eating certain foods)

-bloating and gas

-occasional diarrhea/vomiting

-feeling wierdly faint (like the room is spinning)

-random occasional muscle cramps

-reflux and indegestion pretty frequently

-shortness of breath (feeling like i cant get enough air in each breath)

When i was a baby I had problems with dairy but I could still tolerate small amounts and highly saturated ones (like ice cream and pizza, small amounts of cheese etc.) about a year ago i started to gradually feel worse after eating those previously okay things and now i eat little to no dairy ever. But i am still feeling bad, I have really disliked eating because most of the time it makes me feel sick and so i started researching and after hearing about all this gluten stuff i think it might be the culprit. SO i have a doctors appointment next week and as i have heard many doctors are pretty unknowledgeable so i wanted to hear from some personal experts what they think before i talk with the doctor.

thanks

Wow! Those are almost the exact same symptoms I had! :D As the disease progressed I started to get dermatitis herpitiformis. I had vertigo the spinning sensation and was diagnosed with Meniere's Disease, not a good feeling, because it tends to cause nausea sometimes. :wacko: There is a link between Meniere's Disease and Celiac. Try convincing your doctor or go on a gluten free diet and see if symptoms improve.

Hope this Helps!

MichaelJacksons#1Fan =D

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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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