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In Need Of Advice


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6 replies to this topic

#1 patz16

 
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Posted 03 May 2012 - 09:06 AM

I am 16 years old in the 11th grade and have been suffering for many years. I suffered with extreme fatigue to the point where I would sleep for 14 hours and still be tired, Severe depression and anxiety,joint pain (more than my 76 year old grandmother), decalcification of my teeth. About 2 years ago I lost 40 pounds in about a month or 2 and my mother was very worried. The hospital told us : nothing was wrong with me and other doctors said the same but one found H-Pilori and I was diagnosed with that. The thing is that even though I got past that infection, I was still sick and getting worse. About a month ago I couldn't eat without getting sick or having diarreha. My cousin is glueten sensitive so his mother told mine that I should follow that diet and I did. I got so much better - I became another person , much energy , feeling great , no more pain. I realize now that there is probably a 95% chance that I have celiac disease but I really don't want to get tested because I know that I would have to go on that horrid glueten diet again. What bothers me the most is that I could get a negative even if I go back on the diet. My question is Should I go back on the diet to get tested or just live my life this way? I dont think the pros outweigh the cons Please help, I would love to hear from others.
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Toughing it out on a 2 year doctor hiatus. I give up.

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#2 Lisa

 
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Posted 03 May 2012 - 09:35 AM

I am 16 years old in the 11th grade and have been suffering for many years. I suffered with extreme fatigue to the point where I would sleep for 14 hours and still be tired, Severe depression and anxiety,joint pain (more than my 76 year old grandmother), decalcification of my teeth. About 2 years ago I lost 40 pounds in about a month or 2 and my mother was very worried. The hospital told us : nothing was wrong with me and other doctors said the same but one found H-Pilori and I was diagnosed with that. The thing is that even though I got past that infection, I was still sick and getting worse. About a month ago I couldn't eat without getting sick or having diarreha. My cousin is glueten sensitive so his mother told mine that I should follow that diet and I did. I got so much better - I became another person , much energy , feeling great , no more pain. I realize now that there is probably a 95% chance that I have celiac disease but I really don't want to get tested because I know that I would have to go on that horrid glueten diet again. What bothers me the most is that I could get a negative even if I go back on the diet. My question is Should I go back on the diet to get tested or just live my life this way? I dont think the pros outweigh the cons Please help, I would love to hear from others.

Hello and Welcome!

If you have a family history of Celiac and a positve response to the diet,it's likely you have Celiac Disease of a Gluten Sensitivity.

To be tested, it's recommended that a person consume gluten for three months to get the tested. Do you want to do that?

It's a personal choice. :) Not too much help, am I? :rolleyes:
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 patz16

 
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Posted 03 May 2012 - 09:46 AM

Hello and Welcome!

If you have a family history of Celiac and a positve response to the diet,it's likely you have Celiac Disease of a Gluten Sensitivity.

To be tested, it's recommended that a person consume gluten for three months to get the tested. Do you want to do that?

It's a personal choice. :) Not too much help, am I? :rolleyes:

I realize that it is. I plan to attend college in Fall 2013, but I am worried I wouldn't be accommodated as well if I don't have proof that I am indeed glueten intolerant. Will I be able to tell hospitals for instance that I know I am, or would I need to be tested for that?
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Toughing it out on a 2 year doctor hiatus. I give up.

#4 pricklypear1971

 
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Posted 03 May 2012 - 10:24 AM

My Dvice is to find a doctor who is knowledgeable about celiac disease/NCGI (hard to do but worth it) and explain your symptoms, reaction going gluten-free, and family history.

I would ask for vitamin level tests - irons, b's, d, k, calciums, magnesium. If these are low it could support celiac disease. Ask for HLA testing, that could also support celiac disease.

Explain your concerns about school and ask for a dx. See what happens.

My ND has dx'ed me celiac based on alternative methods above, along with my raging rash. I couldn't be tested because of steroids (rash). Of course, going gluten-free was a shot in the dark anyway, but I couldn't challenge later because it was gluten and I'd be covered head to toe in my rash...
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 MitziG

 
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Posted 04 May 2012 - 10:39 AM

If it were me, I would just call myself celiac and go with it. As for college....could be tricky...but, you may get a doc to dx you without the tests based on response to the diet and your history. Dr shop if you need to! I question whether college accomodations wud be worth it. I wouldn't trust a school cafeteria to cook me gluten-free meals without contaminating them!
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#6 mushroom

 
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Posted 04 May 2012 - 11:39 AM

Are you going away to college and would you have to pay for a meal plan? This would be the only consideration I could think of for getting a diagnosis from a medical professional. I think you would be much more likely to be able to work a diagnosis out of a naturopath (ND) than an alleopathic (M.D.) doctor - they are a lot more rational about considering all the facts instead of just test results.
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#7 patz16

 
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Posted 04 May 2012 - 02:58 PM

I think I should mention that I am not from the mainland United States and am from the United States Virgin Islands. I don't even think we have those kind of doctors here.
Also I do wish to go away to college, but I am not sure if I will be able to.
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Toughing it out on a 2 year doctor hiatus. I give up.




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