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I have a five year old son that has been having a strange array of issues since he was a baby. Of course the usual story was; I took him to see doctors and they said, "diarrhea and loose stools is sometimes normal in children". The latest doctor said, "sometimes children are just skinny". I finally did research myself and came to gluten as being a possibly. I asked the doctors to screen him for celiacs, but by this time I had already started tampering with his diet. He was still eating gluten, but not nearly as much. His first test came up positive for IgG, but negative for the others. After four-weeks of gluten-free diet he has gained 3lbs (more weight than he has gained in the last 2 years). For the first time ever in his life he is having a regular stool and all the symptoms have all but disappeared.

We also have a 7 month old baby girl who has had issues with constipation despite the fact that I am still breastfeeding. She also was having constant fussiness and we were beginning to be concerned that she might have a mental health issue because she wouldn't play with her toys, or allow me to put set her down. It finally occurred to me that she might be getting gluten or cesian through my breast milk. We immediately started her on soy formula and a day later noticed a drastic change in her temperament.

I am still dealing with these difficult doctors who don't seem to be very helpful. I am overwhelmed trying to figure out what to feed my family. I have not lost my milk yet, and I am not sure whether I should continue breastfeeding and go on a no-gluten diet myself or just switch her to formula. Any suggestions comments or good advice is much needed! Please help!

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The decision to breast feed or use formula is a very personal one.

My son wouldn't latch on as an infant, then I got mastitis (and decided to just formula feed him after it cleared up). He started life constipated, and d...so one day I had a freak out mommy moment and decided it was milk protein (stepson and hubs have/had milk issues). So I gave him formula for a few days while I went in a milk free diet - then soy free because the soy formula wasn't producing "perfect" bm 's either...

Anyway, i noticed he highly preferred pumped breast milk over any formula - it seemed easier on his stomach. But then again, he was a newborn not 7 months. The more casein free, soy free breast milk he got the better he was. I had to give up pumping around 7-8 months. I couldn't do it anymore. He was on Nutramiagen til 1, then I tried him in cows milk and he was fine. We always assumed milk protein intolerance, which they say usually heals by 1. Of course, now I wonder about gluten but so far he tests - and is pretty much symptom free.

They say milk protein doesn't pass through breast milk - but I talked to lots of moms that swear otherwise. They say the same about gluten - but only you can be the judge.

So, it's up to you. You do what's best for your family.

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The decision to breast feed or use formula is a very personal one.

My son wouldn't latch on as an infant, then I got mastitis (and decided to just formula feed him after it cleared up). He started life constipated, and d...so one day I had a freak out mommy moment and decided it was milk protein (stepson and hubs have/had milk issues). So I gave him formula for a few days while I went in a milk free diet - then soy free because the soy formula wasn't producing "perfect" bm 's either...

Anyway, i noticed he highly preferred pumped breast milk over any formula - it seemed easier on his stomach. But then again, he was a newborn not 7 months. The more casein free, soy free breast milk he got the better he was. I had to give up pumping around 7-8 months. I couldn't do it anymore. He was on Nutramiagen til 1, then I tried him in cows milk and he was fine. We always assumed milk protein intolerance, which they say usually heals by 1. Of course, now I wonder about gluten but so far he tests - and is pretty much symptom free.

They say milk protein doesn't pass through breast milk - but I talked to lots of moms that swear otherwise. They say the same about gluten - but only you can be the judge.

So, it's up to you. You do what's best for your family.

Thank You pricklypear! By the way I love the Pic!!

I too suffered from breast infections, 3 for my daughter. That is one reason why I don't want to give up breastfeeding her. Any mom who has gone through that knows how honorific it can be, so to have survived it three times in a period of two months or so was rough. However, after switching her to the formula she is so content and happy now, playing with her toys and learning like a normal baby. I already don't drink milk or eat cheese because my son and husband are both lactose intolerant. I see you're signature says something about genetic testing. How is that done? Does that determine whether you are celiac or if you are just pre-disposed to it?

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It is a very personal decision. I will say, I am a very strong believer in breast milk for babies.

I have been on some sort of elimination diet for 5 years now through 3 kids. The fist was the most difficult (more allergens and being a first time Mom just learning all this stuff!) Now, it's just life.

Breastmilk is best for babies. Even for babies with allergies, if the Mom removes them from her diet it is better than any formula. I also know life is hard and eliminating things may not be easy at all! It is tough. Again, as I sit here with baby #3 I still get cravings :)

Follow your gut! Hang in there. I know it's a tough decision~

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You could always try to go gluten free diet and see if it helps and then go from there. I can't imagine how it would hurt her in any way? I'm probably biased b/c I bf'd my son for 2 1/2 years. I was really glad that I had the opportunity to do that.

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Thank You pricklypear! By the way I love the Pic!!

I too suffered from breast infections, 3 for my daughter. That is one reason why I don't want to give up breastfeeding her. Any mom who has gone through that knows how honorific it can be, so to have survived it three times in a period of two months or so was rough. However, after switching her to the formula she is so content and happy now, playing with her toys and learning like a normal baby. I already don't drink milk or eat cheese because my son and husband are both lactose intolerant. I see you're signature says something about genetic testing. How is that done? Does that determine whether you are celiac or if you are just pre-disposed to it?

It is hard to watch your baby improve, and question whether you should do something that may change that.

I do suggest you get yourself tested before going gluten-free, if you haven't been tested already and are still on gluten, before you go gluten-free for breast feeding (if you decide to do that). celiac is genetic - so there's a chance you may have an issue, too, and if you go gluten-free you may not be able to go back on gluten for testing later.

Here's a link about celiac testing - the fact sheets explain genetic and antibody testing. http://www.cureceliacdisease.org/living-with-celiac/guide/fact-sheets

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Your story is all too familiar. I had to children in the early 80's and at that time docs said their throwing up was normal. Docs thought I wasn't burping them enough. Formula then was limited and of course there was no mention of allergies. However, I put my oldest on fresh goat's milk, we had goats at the time, and she did really well. Both girls now are dairy and gluten free.

I think you would be wise to follow your gut and change diets, even if tests do not show what you suspect. It could be that your son does not have an autoimmune disease but he may do better on a gluten-free and/or dairy free diet.

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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