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Cd Confused With Anorexia...


bored-girl

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amber-rose Contributor
Well, actually you have to eat a lot of gluten every day for 3 months before the biopsy, and even that may not be enough to get you positive results on the biopsy. Did they run blood tests? Your positive dietary response should be enough reason to stay gluten-free.

Yes, I did have blood test done. One came back very high, and one came back negative. My gastrologist (sp?) said that I should just eat one slice of bread a day for a week before the bioposy, since i'm very very sensitive to gluten. So i'm going to pig out on gluten during Christmas. He said that should show up well enough for the bioposy. He also said he needed physical proof for me to be considered a true Celiac. I would've been happy with just eating gluten free with out the bioposy and making myself sick. But the doctor insisted. <_< The doctor did say though, that he wasnt sure what else it could be. :rolleyes:.

-amber

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eKatherine Rookie

Your gastroenterologist is wrong. If you even had one positive on the blood test, you have celiac, and you need to be on the diet whether or not you ever have a positive biopsy. Three months on gluten is considered the minimum time it will take to produce atrophy reliably, and even then, it is something that many celiacs never have, regardless of how sick they become or how well they respond to the diet.

It is way behind the times to say that the only true celiac symptom is villi atrophy, and without it you don't have gluten intolerance. You need a new GI.

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  • 2 weeks later...
kbtoyssni Contributor
Yes, I did have blood test done. One came back very high, and one came back negative. My gastrologist (sp?) said that I should just eat one slice of bread a day for a week before the bioposy, since i'm very very sensitive to gluten. So i'm going to pig out on gluten during Christmas. He said that should show up well enough for the bioposy. He also said he needed physical proof for me to be considered a true Celiac. I would've been happy with just eating gluten free with out the bioposy and making myself sick. But the doctor insisted. <_< The doctor did say though, that he wasnt sure what else it could be. :rolleyes:.

-amber

By the time your villi are worn away enough to get a positive biopsy, you have already done a lot of damage to your body. If you know you are gluten intolerant, I don't think it's worth it to do that kind of damage to your body just so you can have the official seal-of-approval from your doc. Have you talked to your parents about whether or not it is worth it to get a biopsy? If you are satisfied that you have celiac or at least gluten intolerance, do you need an official diagnosis? Another thing to consider is that there may be complications when you get older and have to find your own health insurance. It's not necessarily a bad thing to not have a diagnosis on your record... But talk to your parents about this.

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  • 2 weeks later...
MandyCandy Rookie

I know how you feel! I'm 21, 5'3 and weigh anywhere from 96 - 98. And I drop weight very quickly (if i'm sick for even a week and my eating patterns change I can go to the low 90's- 89. I recently started going gluten-free and now i'm worried i'll lose more weight. I Don't want to gain any either but i'm worried people will jump to the conclusion its an eating disorder causing the weight loss not celiacs.

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  • 3 weeks later...
Sugar-free/ Gluten free Girl Newbie

Hey Whitney!

I'll be 13 soon and i was just diagnosed with type 1 diabetes and celiac. When i was diagnosed i was only 63 pounds! Now about 2 months later i am about 73 pounds.

Anne Marie

ktscleary@sc.rr.com

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sillyyak Enthusiast

My anorexia was actually a symptom of the sprue and not "true" anorexia. You might want to look into whether or not you have celiac.

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    • cristiana
      Hi @matts Yes.... it's a mystery to me why we are holding onto that 'o'.   I expect it won't be there in 100 years! I think you are very wise to go back to your GP to chat through your options.   If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS.   If not, and you would still like to know and can afford it, you could do what my friend did,  She went direct to a consultant at our local private hospital to have an endoscopy.  Her situation was different from yours in that she did not test positive, but she did have gastric symptoms.  Her Dad was a coeliac and she wanted to be sure she wasn't one of a small number of coeliacs that don't ever test positive in the blood test, but do have villous damage in their gut. I do hope things work out well for you - perhaps drop by and give us an update sometime! Cristiana 
    • matts
      Hi Cristiana, You’re spot on, I am from the UK!  In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day. Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at!  I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results. Thanks again, Matt  
    • cristiana
      Hi @matts Welcome to the forum. I'm a coeliac living in the UK.  I have a hunch you may be posting from the UK because of the way you spell 'coeliac.'  Our American friends, quite sensibly in my opinion, drop the 'o'! Anyway, if so the UK, 'satisfactory' blood tests mean as follow: 'Satisfactory. Take no action - This means that the doctor has looked at the results and deemed it to be very close to the normal range for the test and the result is not concerning. Some patients have consistently abnormal results that are 'normal' to them.'  Source: https://www.nrmc.nhs.uk/test-results#:~:text=Satisfactory.,are 'normal' to them. Now,  I have annual/biannual blood tests and get a few blood tests that consistently hover just above normal limits, and they come back with that typed next to them.  The doctors can look back at my records and see that the readings are normal for me. However, under your particular circumstances I would definitely request to be sent to a gastroenterologist.  Because although your GP considers your blood tests are satisfactory, i.e. just outside normal limits, they ARE nevertheless outside normal limits and you do have a first degree relative with Coeliac Disease.  I am no doctor but I would say this gives sufficient grounds for investigation, especially if you have been experiencing any gastric symptoms,  or seemingly unrelated things like headaches, tingling extremities, or tiredness - the symptoms of coeliac disease vary enormously from individual to individual. Also, may I ask you, have you been consuming gluten with most meals in the past few weeks prior to your blood test?  For a positive blood test,  coeliacs need to consume the equivalent of about 2-3 slices of gluten containing bread a day over a six to eight week period.  Because if you don't eat much gluten, you may not be reacting much.  Bear in mind that if you do go forward for further blood tests or an endoscopy, you will need to keep eating gluten. If it turns out you are a coeliac, in the UK a coeliac diagnosis will entitle you to all sorts of important NHS health monitoring and support, which in the long-term even if you are feeling well now, could be very beneficial to your health.   One other reason it would be good to know one way or another, is because if you turn out to be a coeliac, you will need to take the diet extremely seriously.  It can at times be a bit restricting, as you mother I am sure will tell you.  And gluten free substitutes can be expensive - my gluten-free pasta, my gluten-free chocolate biscuits, my gluten-free bread adds pounds to my weekly shop!! Cristiana      
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    • trents
      For the doctor to say the results of the test were "satisfactory" is rather odd. By that did he mean he didn't think you have celiac disease.? I mean, the result of the test is positive for celiac disease. Or, did he mean that it was satisfactory in the sense of agreeing with your symptoms and family history as indicating celiac disease? It was a rather ambiguous remark in my opinion.
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