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After Diagnosis

MKLP

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MKLP Newbie
MKLP
Posted

I recently tested positive for Celiac disease back in June through the blood test. I will now be going to see a GI specialist on top of that. Through the research I have done, it states that the only definitive way to prove celiac disease is through the intestine biopsy which I will be asking for. The only thing is that I have now been gluten free for the past few months and it will still be at least a few months before I get the biopsy done, won't it prove inconclusive since I am starting to heal? Also, although I have been gluten free for the last few months I have to say I definitely don't feel 100%. Did anyone find that it took a while to recover from the damage or are you supposed to see immediate effects of going gluten free? I for example, now have indigestion which I never had before, I am extremely tired, and my stomache is sore. On the positive side however, I am not going to the bathroom 20+ times a day (no exageration) and my hair is starting to get thicker now. Any feedback on your experience would be much appreciated!

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JillianLindsay Enthusiast
JillianLindsay
Posted

I would say you are showing signs of healing (less bathroom trips, more hair) and also gluten withdrawal! Yes, it exists. I have been gluten-free for 5 weeks and went through a withdrawal period and have had new symptoms pop up during the healing process. Some people feel immediate relief and some take up to a year to feel themselves again, it's a very individual response to the diet. Also, while healing some can't have the gluten-free alternatives to wheat foods (highly processed foods) and have to stick to a very natural diet of meats, veggies, fruits, brown rice, and maybe potatoes. Some people have to avoid dairy for a little while during healing and some have to avoid acidic foods and/or caffeine, then slowly add things back in once they are feeling better.

Did your GI tell you to continue eating gluten-free leading up to the biopsy? My understanding is that you shouldn't change your diet until after the biopsy to avoid a false negative. Depending on how long you've been sick they may still be able to see if there is damage to the villi, but if you've been healing for a few months it may skew the results. The scopes are also very important for screening for other small-bowel diseases.

Has your DR addressed any vitamin deficiency issues? Many people with celiac disease have anemia (low iron and b12) which make one very tired, along with other possible vitamin deficiencies (calcium, folic acid, etc.).

Good luck and welcome to the forum :)

Jillian

I recently tested positive for Celiac disease back in June through the blood test. I will now be going to see a GI specialist on top of that. Through the research I have done, it states that the only definitive way to prove celiac disease is through the intestine biopsy which I will be asking for. The only thing is that I have now been gluten free for the past few months and it will still be at least a few months before I get the biopsy done, won't it prove inconclusive since I am starting to heal? Also, although I have been gluten free for the last few months I have to say I definitely don't feel 100%. Did anyone find that it took a while to recover from the damage or are you supposed to see immediate effects of going gluten free? I for example, now have indigestion which I never had before, I am extremely tired, and my stomache is sore. On the positive side however, I am not going to the bathroom 20+ times a day (no exageration) and my hair is starting to get thicker now. Any feedback on your experience would be much appreciated!
MKLP Newbie
MKLP
Posted
  • Author
I would say you are showing signs of healing (less bathroom trips, more hair) and also gluten withdrawal! Yes, it exists. I have been gluten-free for 5 weeks and went through a withdrawal period and have had new symptoms pop up during the healing process. Some people feel immediate relief and some take up to a year to feel themselves again, it's a very individual response to the diet. Also, while healing some can't have the gluten-free alternatives to wheat foods (highly processed foods) and have to stick to a very natural diet of meats, veggies, fruits, brown rice, and maybe potatoes. Some people have to avoid dairy for a little while during healing and some have to avoid acidic foods and/or caffeine, then slowly add things back in once they are feeling better.

Did your GI tell you to continue eating gluten-free leading up to the biopsy? My understanding is that you shouldn't change your diet until after the biopsy to avoid a false negative. Depending on how long you've been sick they may still be able to see if there is damage to the villi, but if you've been healing for a few months it may skew the results. The scopes are also very important for screening for other small-bowel diseases.

Has your DR addressed any vitamin deficiency issues? Many people with celiac disease have anemia (low iron and b12) which make one very tired, along with other possible vitamin deficiencies (calcium, folic acid, etc.).

Good luck and welcome to the forum :)

Jillian

Thank you for the welcome. Unfortunately the GI gave me no instructions and said it will just be an initial consultation so I guess I will find out then. They didn't find any vitamin deficiences, however I am a little skepitcal of the doctor I am seeing as she is only filling in for my regular doctor while she is on mat leave. This sub had to look on her blackberry what celiac was. Scary! Anyways, thank you for the info because I was just feeling unsure about my symptoms and it sounds like what I am going through is normal.

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Thank you for the welcome. Unfortunately the GI gave me no instructions and said it will just be an initial consultation so I guess I will find out then. They didn't find any vitamin deficiences, however I am a little skepitcal of the doctor I am seeing as she is only filling in for my regular doctor while she is on mat leave. This sub had to look on her blackberry what celiac was. Scary! Anyways, thank you for the info because I was just feeling unsure about my symptoms and it sounds like what I am going through is normal.

Jillian is right that you need to be eating gluten before the biopsy. I think the rule of thumb is several slices of whole wheat bread per day for at least 6 weeks. If you don't feel like reverting to going to the bathroom 20 times a day and losing hair for 6 weeks, you can always cancel the biopsy and consider yourself sufficiently diagnosed. Regardless, you may want to see an allergist to see if your indigestion is caused by food allergies (many, possibly most celiacs have several). And as Jillian also says, you might consider giving up dairy. In that case, it's probably most celiacs are casein intolerant.

Good luck to you, and I hope you find your answer soon.

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