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How Long Till He Starts To Feel Better? (Anemia Goes Away, Etc.)
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Hi,

 

My 4 year old son was just diagnosed with celiac disease. We had blood work done twice, endoscopy with biopsy, etc. He has been on a strict gluten free diet for about a week. He is very anemic, has had very slow growth the last 2 years, has the typical "pot belly", etc.  His stomach aches have already stopped...but I was curious when the anemia, pot belly, and growth, etc. might start to resolve. What was your experience?

 

Thanks so much.

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Hi,

 

My 4 year old son was just diagnosed with celiac disease. We had blood work done twice, endoscopy with biopsy, etc. He has been on a strict gluten free diet for about a week. He is very anemic, has had very slow growth the last 2 years, has the typical "pot belly", etc.  His stomach aches have already stopped...but I was curious when the anemia, pot belly, and growth, etc. might start to resolve. What was your experience?

 

Thanks so much.

It can take a while. A few months to maybe a year or so.

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It took me about six months to stop being anemic and I was taking iron supplements.  Has the doctor suggested iron?  Has he been tested for other vitamin and mineral deficiencies?  

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Yes - the doctor has him on an iron supplement - adult dose.He is also taking a multivitamin. I just was curious -  as I know it takes time for the gut to heal for him to even be able to absorb his nutrients/vitamins/iron. I was hoping he would start to feel better in weeks vs months.  :/  But I understand this may be a long process.

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Welcome Lynn!

Your son may feel better within weeks rather than months. Young kids tend to improve quickly once all gluten is removed. Learn all you can about how to keep him gluten-free and preventing cross-contamination. Take a look at the "newbie 101" thread:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

It will take some time to correct nutritional deficiencies, but you will likely see symptom improvement in the coming weeks.

Hang in there Mom!

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Thank you so much!  We are trying to be strictly gluten free but there is def. a learning curve. I didn't realize his gummy flint stone vitamins had it....so I replaced those last weekend....and then today he got a nibble off another child's cracker at school. He is still learning too - that he can't take bites off other people's food they offer, the snack table, can't have foods he used to have, etc. It's just so hard - as you want them to heal ASAP but there is this long learning curve too! We have removed all items with gluten in our house....but have to replace the toaster this weekend. 

 

I'm so happy we found out what was making him ill...and making the change to gluten free wasn't too hard (as I already cook/don't' eat out much, etc.) but the lifestyle change for him is hard. I've bought children's books about being gluten free, etc. to try to help him understand...but he just turned 4 last month...so the truth is the maturity of remembering not to eat other food without asking mommy first or given to him by the teacher (for snack) is tough.

 

I just can't wait for him to feel better. My stomach just drops every time I find out he's been glutened a little bit either because I made a mistake or he did (learning curve). I know it just slows the healing down. Frustrating.

 

 

Welcome Lynn!

Your son may feel better within weeks rather than months. Young kids tend to improve quickly once all gluten is removed. Learn all you can about how to keep him gluten-free and preventing cross-contamination. Take a look at the "newbie 101" thread:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

It will take some time to correct nutritional deficiencies, but you will likely see symptom improvement in the coming weeks.

Hang in there Mom!

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It is indeed frustrating! I can tell you it gets better with time. For now try not to be too hard on yourself --- mistakes will happen, but they will become fewer and farther between as time goes on.

Often the reactions to small amounts of gluten become worse...which is no fun, but does help to reinforce the need to be completely gluten-free ... 4 year olds learn very quickly...he'll become a more confident celiac...again with time.

Sounds like you are off to a great start...keep up the great work and let us know if we can help :)

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PS....if you are going gluten free with him you should have a complete celiac antibody panel before removing gluten as celiac disease is genetic.

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PS....if you are going gluten free with him you should have a complete celiac antibody panel before removing gluten as celiac disease is genetic.

 

Yes - I was going to talk to my childrens pediatrician about this (or gastro) as he has a 2.5 year old sister. She isn't showing any signs like he was even at that age (looking back now - pot belly, loose poop issues, etc.) but I worry about it as the house is gluten free now. She is getting gluten containing snacks at school though...so I think I can get her tested anyway. My husband was diagnosed with IBS 10 years ago. They tested him for celiac at the time and he came back "borderline" on the blood results. They told him he could try a gluten free trial to see if it helped...he did for a short stint and said it didn't....so that was that and he just took the IBS diagnosis and moved on. But - now that our child has been positivly diagnosed...I'm thinking he should consider being retested.

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Yes - I was going to talk to my childrens pediatrician about this (or gastro) as he has a 2.5 year old sister. She isn't showing any signs like he was even at that age (looking back now - pot belly, loose poop issues, etc.) but I worry about it as the house is gluten free now. She is getting gluten containing snacks at school though...so I think I can get her tested anyway. My husband was diagnosed with IBS 10 years ago. They tested him for celiac at the time and he came back "borderline" on the blood results. They told him he could try a gluten free trial to see if it helped...he did for a short stint and said it didn't....so that was that and he just took the IBS diagnosis and moved on. But - now that our child has been positivly diagnosed...I'm thinking he should consider being retested.

I agree....once gluten is reduced significantly it can affect the antibody tests. If everyone feels better gluten-free - great - except you lose this data and may need to perform a gluten challenge if a diagnosis is needed in the future - which can be extremely difficult.

I'd vote for complete antibody panels all around. Your primary can order these tests.

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It sounds like you're doing a great job! My daughter (11) also had mild anemia, osteoporosis and slow growth. It's been 6-1/2 months since she was diagnosed, and her tTG went from 99 down to 6, her anemia is gone, and she grew 1-1/2 inches and gained 7 pounds! She also has so much more energy and we saw that difference within the first month. I've definitely read that kids heal faster, and I asked the Peds GI at our 6 month check-up if her low tTG meant that her small intestines are healed. He said yes. So keep up the good work and I bet you start noticing big changes in him soon!

 

(As a side note, the bone density doesn't respond as quickly, but hopefully at 4 that isn't too much of an issue for him. She had her first 2 fractures - in the same arm at the same time - at age 3-1/2 - so we definitely trace her Celiac back to a 3 week bout of diarrhea when she was about 6 months old.)

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It sounds like you're doing a great job! My daughter (11) also had mild anemia, osteoporosis and slow growth. It's been 6-1/2 months since she was diagnosed, and her tTG went from 99 down to 6, her anemia is gone, and she grew 1-1/2 inches and gained 7 pounds! She also has so much more energy and we saw that difference within the first month. I've definitely read that kids heal faster, and I asked the Peds GI at our 6 month check-up if her low tTG meant that her small intestines are healed. He said yes. So keep up the good work and I bet you start noticing big changes in him soon!

 

(As a side note, the bone density doesn't respond as quickly, but hopefully at 4 that isn't too much of an issue for him. She had her first 2 fractures - in the same arm at the same time - at age 3-1/2 - so we definitely trace her Celiac back to a 3 week bout of diarrhea when she was about 6 months old.)

That's great news!  I'm so happy for your daughter!  Good job, Mom!

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Good news! We went for his 2 week followup with the gastro (from last visit when he had the endoscopy)...and he's gained 4lbs! Still stomach distension (belly) but she thinks as he heals up and there is more food being absorbed the  belly will decrease! Wants to rerun blood work in 3 months to verify anemia has resolved and other numbers have normalized.

 

He is eating like a horse lately....I guess because the stomach aches are gone...so I'm not surprised he put on some weight - but 4lbs! sheesh!  :o)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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