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Can Anyone Help

Guest dianecm

By Guest dianecm
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest dianecm
Guest dianecm
Posted

My 6 year old son was diagnosed with celiac (bloodwork showed it - biopsy was inconclusive). He has been on the gluten-free diet for 3 months now. Repeat bloodwork showed the celiac aspect was much better - and he also feels&looks much better. However the bloodwork still shows the same amount of inflamation and also his iron level has gone down. It has been suggested that possibly he also has a cows milk intolerance. I am going to try to eliminate that now as well. His doctor is thinking of possibly sending us to a blood specialist because of all this. Anyone have any similar experiences?

Thanks.

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Christie Newbie
Christie
Posted

I was diagnosed as an adult so it may be different for a young child but...my iron was so low at first that the doctors asked me how I even got out of bed! Here it is 3 years later and my iron is just about normal. It still goes up and down but mostly it's okay.

Keep working on it and try not to get discouraged. ^_^

Lily Rookie
Lily
Posted

Hi Diane,

If your son's villi haven't healed up then he IS lactose intolerant. The ends of the villi produce the enzyme that digests the dairy. If the ends of those villi are damaged then dairy is a no-no. If he still has problems after eliminating dairy, it's possible that he can't handle casein.

Blessings,

Lily

tarnalberry Community Regular
tarnalberry
Posted

just a quick note... if he's eating meat, have him drink a glass of orange juice with it - the vit C makes it easier to absorb more iron from food.

Guest dianecm
Guest dianecm
Posted

Thanks for all replies! We do know that he is lactose intolerant and were treating him accordingly. About a week ago we decided to remove cow's milk as well to see if that helped. What exactly is casein - is it just in cows milk or in sheep and goat milk as well?

gaceff Newbie
gaceff
Posted

Casein is not a sugar as far as I know (like the lactose), but a protein (like the gluten).

It is contained in every dairy product - cheese, not only milk.

gf4life Enthusiast
gf4life
Posted

Casein is also added to a lot of other products, so keep reading those labels. Some things to look for, on the labels of food products, when eliminating dairy 100% are : whey, sodium caseinate, any other form of caseinate, and of course if the allergen label says milk, or of there is any added butter, cheese, yogurt, sour cream, cream, etc. Non-dairy does not mean dairy-free either, so be careful when getting non-dairy products.

I found out I was casein intolerant through Enterolab, and that was a surprise to me at first, but looking back I can see I had problems with dairy all along. My small intestine/colon is inflamed and I know that part of it is from the dairy. I have been (mostly) dairy free for 3 months and it is getting better, but I need to be more strick with it. The reason is this, casein and gluten have a very similar molecular structure and so in the intestines of some celiacs (but not all) their body sees them as being the same, and attacks them accordingly. This is why it is important to know if you are sensitive to dairy and to avoid it 100% if you are.

God bless,

Mariann :)

p.s. I'm not sure, but I think there is casein in all forms of milk, cow, sheep, goat, etc.

If anyone knows for sure, please post the information. Thank you.

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Guest dianecm
Guest dianecm
Posted

Thanks. My son's doctor advised us to eliminate cows milk for now to see if that helped. After his next follow up bloodtest we'll take it from there...

EmilyP2004 Newbie
EmilyP2004
Posted
My 6 year old son was diagnosed with celiac (bloodwork showed it - biopsy was inconclusive).  He has been on the gluten-free diet for 3 months now.  Repeat bloodwork showed the celiac aspect was much better - and he also feels&looks much better.  However the bloodwork still shows the same amount of inflamation and also his iron level has gone down.  It has been suggested that possibly he also has a cows milk intolerance.  I am going to try to eliminate that now as well.  His doctor is thinking of possibly sending us to a blood specialist because of all this.  Anyone have any similar experiences?

Thanks.

It can take up to two years completely gluten free for the damage due to celiac disease to be healed, 3 months is quite a short time to expect recovery but obviously your son is getting better.

One can be tested for lactose intolerance. This problem can be quite often found amongst coeliacs as the microvilli dealing with lactose (milk sugar) may be damaged in celiac disease, these microvilli are on the tips of the villi lining the small intestine which are affected by gluten in people with celiac disease.

Even if your son has lactose intolerance this is usually temporary & a lactose-intolerant coeliac can usually digest hard cheese & yogurt made from cow's milk & also goat's milk/cheese.

I was always able to eat hard cheese, gluten-free yogurt & goat's cheese when I had temporary lactose intolerance.

Iron-deficiency anaemia due to celiac disease can take a very long time indeed to recover by diet alone, even when a coeliac is strictly gluten-free. You can have strong iron supplements to help with low iron but these are on prescription only.

I had to have these strong prescription supplements after I was diagnosed with celiac disease until my iron went back to normal - your son may need these, too, so ask your family doctor if these are needed.

As I said, it can take a long time for a coeliac to recover and heal on GFD so it may be your son just needs time to heal but it is a good idea to see a specialist to check re the blood since his iron has gone down.

.

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