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bigsmiler2 Newbie

My little girl was a really happy content baby for about 2 months. Then she got an ear infection and went from sleeping 6-8 hrs back to 2 hrs. And then she started to having screaming boughts which we think were because she had gas. I tried taking milk out of my diet(she is exclusivly breastfed) which seemed to help a little but she was still very gassy. So I tried taking milk protiens and everything out of my diet. And that seemed to help more, but still didn't get rid of the gassyness. She would have good days and bad days. Her grandpa has celiac and so he suggested I try taking wheat out of my diet. I have only stopped eating gluten/wheat for 4 days now, but she seems so much less gassy. I called my pediatrican to see if it was possible for her to be celiac and she said that it was so unlikely that she wasn't willing to think of it as an option. How do I know if this is really affecting her? I don't really know what all the symptoms in a baby would be. I'm just really at a loss as to where to go from here. Help anyone?


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mat4mel Apprentice

Argh! I hate it when drs don't even want to think it's a possibility. Especially with a family history. I practically had to demand a blood test in my 2 yr old. I would demand a blood test Celiac panel right away. Also you mentioned ear infection-- did she have antibiotics? That can throw your GI flora out of whack. I would go to the health food store and ask for probiotics, and put a little powder in her mouth a few times a day. It won't hurt her. It will help restore the proper bacteria in her intestines if they've been destroyed by the antibiotics.

Mel

kaylee Rookie

Hi,

Your daughter is clearly in good hands with such an attentive mom. I know that doesn't help the situation, but it needs to be said!

I don't know enough to be able to tell you if a firm diagnosis is possible at such a young age, so I won't go there at all. I'll just add my experience, which was that my son was VERY irritable from very early on and had progressively worsening and more frequent screaming fits that just seemed to appear out of nowhere. His sleeping also got worse instead of better with time. To cut a long story short, after eliminating everything I could think of, I finally thought to eliminate wheat (and dairy) and ALL the screaming and irritability evaporated within a week.

I find your pediatrician's response unhelpful, even if she may be right about not diagnosing celiac disease per se at this young age. The problems with your daughter may or may not be transitory, but I know how worrisome it is to see the distress and not know what, if anything in particular, you should be doing.

Keeping your daughter gluten free for now is probably a very good idea if you are seeing improvement and if there is a family history of celiac disease. Make sure you as a breastfeeding mom are getting enough vitamins with everything you're eliminating from your own diet! And, let us know how things develop after you've been off gluten for a bit longer.

Best,

Kaylee

nettywills Newbie

Hi,

I understand where you are coming from. I have a 5 year old (DD) and a 13 month old (DS). My aunt was diagnosed celiac disease 2 years ago. Right at that time I was pregnant and made the connection between problems and gluten.

Currently my daughter is on a gluten diet for 6 months (having been gluten-free for a number of months) so we can run some tests on her because I suspect her as a possibility. I have an appointment with GI in a couple of weeks to try and get some answers. Dealing with my son has been another matter.

As a baby I had to supplement every breast feed with formula within 1/2 hour. Soon he was totally formula (cos wasn't thriving on me) but was very uncomfortable. Went through all different formulas but still screaming for hours on end. Stomach was solid, could hear gas rumbling around but couldn't dislodge, was really smelly when it did dislodge, and he started refusing to eat at all. As a last resort I tried soy formula (much to dr. dismay). After first feed he was fine and has been ever since.

As he started on cereals, the first was a pablum rice. After a couple of weeks my husband (who is very non-believing about celiac disease) noticed that son was much gassier after having the cereal and more uncomfortable. Going down the ingredients found malt extract which celiacs have to stay away from. Needless to say that one was dicarded and a new rice without malt was found.

Dr. very much against soy and totally disbelieving in lactose intolerance (thows up after any lactose containing product) and wouldn't even consider celiac disease. I have since changed Dr. and current said to keep him off gluten until my daughter and myself have some answers and at that point we can decide what to do.

In the last couple of months, he has had some gluten. When he does, he's gassier than normal and in the last couple of days when he's had some (much to my dismay) he has had some quite runny diapers.

Yeah, they say they can't have celiac disease until they have wheat but I'm not so sure about that. My son really seems to react and I suspect he quite possibly is celiac disease.

My research shows that the symptoms for everyone can be quite variable and trying to find it for babies is difficult. To me it sounds as though you could be on the right track.

My biggest piece of advice is to trust your intuition about your child - you more than your doctor know when something is up.

Keeping a food diary is a very good idea both for yourself and for your daughter as she starts solids. Doctors seem to accept things easier when they see proof on paper (at least in my experience).

Good luck to you both.

Annette

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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