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How Long Will It Take For My Symptoms To Go Away?


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6 replies to this topic

#1 laughingchicklol

 
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Posted 23 January 2011 - 09:14 PM

I have been gluten free for six months, I started when I learned I had it. I went to the doctors originally because of extreme weight lose and a lot of other stomach problems. I started being gluten free from day one, but I continued losing weight, I have been admitted to the hospital twice because my weight was too low and finally I had a feeding tube put in to help get the massive calories it takes to gain weight. I have had it for four months now and have gained ten pounds. It almost seems impossible to gain weight. I know it is not because of frequent bowel movements because I have very bad chronic constipation, I have to do a home enema every other day just to go. Why haven't I gotten better? My stomach problems got so bad I can't eat food orally so I am completely dependent on the tube feeding, so I know I have been gluten free for four months but it seems like my absorption hasn't gotten better. It takes 3000 calories for me to maintain my weight of 100 pounds.
It took forever to get diagnosed. I have had the celiac blood test several times but they all came back negative, I didn't get diagnosed until I had a biopsy done. Could I have a misdiagnoses.Is it normal to take this long to get better?
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#2 Bryce

 
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Posted 24 January 2011 - 08:27 PM

Your symptoms sound very severe, i was diagnosed at 13, during this time till my early 20's i found it impossible to gain weight. Later finding out that i was very intolerant to dairy, mainly milk and cheese. Once i had figured that i was feeling much better but the weight gain didnt come till i hit about 22-23.

I think you really need to get yourself checked out again, maybe by another doctor. Also, go see a dietitian as they can help a lot!

Best of luck!
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#3 Eilidh

 
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Posted 25 January 2011 - 08:10 PM

Hey laughingchicklol,
My heart just went out to you when I read this post, that is an awful experience!

I have known that I was celiac since I was 12. I was never an unhealth kid, but I had stomach problems and skin rashes mostly. When I went gluten-free, hardly anyone knew what gluten was, let alone what it was in! So, I got a ton of cross-contamination, and was still sick for at least 2 years.

Now, most of my family has dicovered that they are celiac, and my mom runs a gluten-free bakery. She has had to learn a lot about celiac disease and because of my own interest in it, I have done quite a bit of research as well. What I have learned is that it takes a while for your gut to heal, before it can start digesting again. It sounds like you were effected pretty badly, so it might take you gut longer to heal. I'm not a doctor, I am only 17, but I hope that you know that things will get better. I have met hundreds of celiacs now, and not one that I have talked to has said that they feel worse when eating gluten free. Some have said that they dont feel any better, or they dont notice a difference, and almost everyone says they feel great...but it always takes time.

I really hope that you start to feel better, and I wish I could be of more help. Seeing another doctor would be a very good start, ask if they have any more suggestions or tips or new research to help you out. I always suggest to other celiacs to do as much research as you possibly can, the more educated you are, the more you can help others.

Good luck!

Eilidh
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#4 Live Love Twillight

 
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Posted 16 February 2011 - 02:06 PM

I have been gluten free for six months, I started when I learned I had it. I went to the doctors originally because of extreme weight lose and a lot of other stomach problems. I started being gluten free from day one, but I continued losing weight, I have been admitted to the hospital twice because my weight was too low and finally I had a feeding tube put in to help get the massive calories it takes to gain weight. I have had it for four months now and have gained ten pounds. It almost seems impossible to gain weight. I know it is not because of frequent bowel movements because I have very bad chronic constipation, I have to do a home enema every other day just to go. Why haven't I gotten better? My stomach problems got so bad I can't eat food orally so I am completely dependent on the tube feeding, so I know I have been gluten free for four months but it seems like my absorption hasn't gotten better. It takes 3000 calories for me to maintain my weight of 100 pounds.
It took forever to get diagnosed. I have had the celiac blood test several times but they all came back negative, I didn't get diagnosed until I had a biopsy done. Could I have a misdiagnoses.Is it normal to take this long to get better?


I am so sorry about your condition-no, it normally does not seem to take so long to get used to the gluten-free diet. i am not sure about the weight loss-when i was younger i was diagnosed with type one diabetes. My symptoms, and common ones are weight loss, frequent urination, being super hungry and thirsty, and a lot of being sort of down, maybe dizzy. When you have type one diabetes, a common follow up disease is Celiac disease. that is in my case. All i can say farther is that maybe you have sum other allerigies like tree nuts or lactose. if u r getting fed threw a tube, idk wut to say about alleregies. Sry, hope this gets better.
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"These violent delights have violent ends, and in their triumph die, like fire and powder, which, as they kiss, consume." ~Romeo & Juilet Act II Scene IV

I do not suffer from insanity-I enjoy every minute of it.

Friendship is like peeing on yourself-everyone can see it, but only you get the warm feeling it brings.

Be grateful for what you have today-you never know what tomorrow will bring. . .or take away.

Don't Worry Boys. . .I'm Gluten Free!!

#5 ie99

 
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Posted 22 February 2011 - 12:52 AM

have you considered anything else, such as crohns disease? I remember someone telling me they hay had crohn's and had to eat over 4000 calories to gain weight due to malabsorption.
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#6 GFinDC

 
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Posted 22 February 2011 - 04:09 PM

There is a condition called refractory celiac, where they immune system doesn't seem to know how to back off when the gluten is removed. You could have that I suppose, but it is supposed to be very rare. Have the put you on any immuno-suppressants? That might help if you are still producing antibodies. I am not a doctor either but my brother had both Crohn's and celiac. Some people on the board had both celiac and microscopic colitis. It is not impossible to have 2 conditions at the same time. Has your doctor done a follow up endoscpoy yet? It seems like they would want to check the condition of your gut to see if there has been some healing since going on the diet.

I hope things get better for you soon and you get some answers. :)
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 lizzy951

 
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Posted 24 February 2011 - 02:08 PM

It took me about three week to get used to it
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