Newly Diagnosed - Another Question

[AmandaD]

Hi - AmandaD again in Wisconsin. I have never had a lot of celiac-type symptoms (just minor "upset tummy" situation) and I'm wondering how I'll feel as I begin the gluten-free diet. Is it an amazing transition? Do things get worse before they get better? Is there an adjustment period?

Any advice would be much appreciated. Many thanks.

[KaitiUSA]

Everyone varies with time it takes to feel better. I felt alot better after 3 months but was not back to normal until about 8 months. Some people feel better really soon after being gluten free and with others it takes longer. It depends on the amount of damage done and other factors. Don't expect immediate results though because your body needs time to heal.

[AmandaD]

Kaiti - This is such a silly question ... but will I really "heal"? This whole condition is so odd to me. Does the villi actually normalize again? My great aunt who was diagnosed about 7 years ago said it was a matter of weeks and she - who'd had a severe case of anemia - actually gained weight and the doctor was happy.

I've started eating gluten free this weekend (an amazing amount of cooking...tonite we've having meatloaf)...it's been an adventure, that's for sure.

Everyone varies with time it takes to feel better. I felt alot better after 3 months but was not back to normal until about 8 months. Some people feel better really soon after being gluten free and with others it takes longer. It depends on the amount of damage done and other factors. Don't expect immediate results though because your body needs time to heal.

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[KaitiUSA]

Yep, all the villi get back to normal again in almost all cases.

Very rarely people have refractory celiac disease where there is irreversible damage.

Damage does take time to heal though...people can see improvement quick but for some it takes longer.

[DylansMom]

This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

[AmandaD]

Jennifer - Thanks so much for that info. Fun being a mom, isn't it? I've got three little ones under the age of 5 and I'm seriously considering having them tested (although they don't seem to be symptomatic yet).

Boy, I bet it was empowering finding out what he had and knowing you can actually do something about it.

You used the word "foreign" - that's exactly how it feels. Unbelievably foreign to me. Erg!

This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

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[hilaryw]

This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

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We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too? Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi. Thanks. Allie is 4.

[Rachel--24]

  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

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I definately wouldn't be worried about a wrong diagnosis if you've got both tests coming back positive. Pos. bloodwork + pos. biopsy = Celiac.

[KaitiUSA]

We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too?  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

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You should definitely not be worried about a misdiagnosis in that case. She clearly has celiac.

And a colonoscopy would not be to detect celiac...those are done to detect other things but not celiac.

[robertlastine]

Hi - AmandaD again in Wisconsin. I have never had a lot of celiac-type symptoms (just minor "upset tummy" situation) and I'm wondering how I'll feel as I begin the gluten-free diet. Is it an amazing transition? Do things get worse before they get better? Is there an adjustment period?

Any advice would be much appreciated. Many thanks.

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From what I have been able to tell, you will notice a change in 3 to 6 DAYS. It is incredible. I too was just diagnosed and found out that what I had grown accustomed too I didn't have to settle for. Now life is looking up. Instead of looking at what I can't eat I look at what I can eat and how it will improve my life. It might be a psychological game I am playing with myself but any cheating will only hurt ones self. Stick to the diet.

[KaitiUSA]

From what I have been able to tell, you will notice a change in 3 to 6 DAYS.  It is incredible.  I too was just diagnosed and found out that what I had grown accustomed too I didn't have to settle for.  Now life is looking up.  Instead of looking at what I can't eat I look at what I can eat and how it will improve my life.  It might be a psychological game I am playing with myself but any cheating will only hurt ones self.  Stick to the diet.

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Some people may see a difference that quick but I have not found many who feel better so quick. Don't expect to feel better so soon but if you do then count your blessings.

[DylansMom]

We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too?  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

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In my son Dylan's case he had the colonoscopy ONLY because blood was found in his stool. We went ahead and had it done at the same time for 2 reasons...A) I have thought there was something "off" in Dylan for years...he had an enormous belly. Basically he looked liked an Ethiopian child who was malnourished, but the Dr's kept telling me "No no he is just small it has to 'go' somewhere' , so I figured the more we find out the better and because if Dylan had to go to the hospital for this and then later have to go again he would be even more worried because he would have some idea of what to expect. This way we got it all done at one time and hoped it would be the better idea. Thankfully the colonoscopy was clear and fine.

The colonoscopy was not directly related to Celiac.

[Cindy Chabot]

Hi

I am new to this disease as well. Both my son and I were diagnosed with it in June. We thought we were eating gluten free until we met with a dietician, she really helped us. We have been gluten-free since August 4, although I think I've been glutened in some restaurants. I also had a colonoscopy to rule out any other problems. I have been doing a lot of my own baking, thank goodness I like to bake. There is a store about an hour away from where I live and the own has celiac disease, so everything in the store is gluten-free. He makes a great celiac flour that you can substitute into almost any recipe. I have felt quite depressed since our diagnosis but I hope this will pass. The worst symptom for my right now is the fatigue. I had the summer off, but I am back to teaching so I hope I have the energy.

[familee3]

My 4(almost 5)-year-old daughter was diagnosed last Friday. I started her on a gluten-free diet that day. I am overwhelmed and concerned about my husband and myself. I had the blood screening test done yesterday and am waiting for my results. The Dr. said we will have to schedule the scope if my test comes back positive, but I don't see the point. We only have one child and have already changed the diet for the three of us now. A positive on the bloodwork just tells me that I can't cheat when I do lunch on my own and I figure I'll be healthier anyway.

As with many others, my daughter had no symptoms other than being small. She's well below the 3rd percentile in size. She's about average for a 3-year-old now. I am so hopeful that with this diet she will begin to grow more and at least be closer to "normal" size when she starts Kindergarten next year. School is hard enough without being picked on for being small.

I am so greatful for this website and for those willing to put their experience out there for the rest of us to learn from. I can't imagine how lost I'd feel without having this lifeline.

Please keep up the lines of communication!