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Could It Be Celiacs?

RainyZ

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RainyZ Rookie
RainyZ
Posted

I am glad I found this board. I am hoping someone can help me.

A little history - my 15 month DD had not gained any weight at her 1 yr appt from her 6 month - not even an ounce. She eats very well so I was shocked. She started to look so tiny and people would comment to me about how small she looked. She had been in the 50th percentile for weight and went down to the 5th. Because she was eating - and I still breastfeed her - It didn't really hit me until I looked at earlier videos and pictures.

I don't eat many grains myself, so her diet didn't really have many. Oatmeal occassionally. We went to visit in-laws for the holidays and the diarrhea started there after a few days. Looking back, she did eat much more grain than at home. It wasn't so much diarrhea as just diapers full of undigested food if that makes sense. It continued for a while. 4 or 5 a day. She would have red-rimmed eyes and even after sleeping 14 - 16 hours a day, she would be tired. I took her to the doctor and they ran a test on her stool and said it wasn't viral. I thought it might be dairy. I got rid of the dairy and that is when she started getting more grain products - crackers, etc. It got worse. I do give her dairy again - yogurt and cheese. I did stop the grains and it got a little better, but I hadn't known how pervasive gluten is in our foods. So while the diarrhea got better sometimes, it would come back. While all this went on, I pulled back from solids a bit (except veggies and fruits) and breastfed her more. She had only been nursing 4 times a day but I started offering it more often and she did start gaining weight again.

She doesn't vomit from grains and she doesn't complain of stomach issues. She sleeps fine and the tired look is gone from her most of the time. But I do notice that gluten containing products cause the undigested food diapers and red eyes - within 24 hours. As I write this, I am realizing that she does get a bit clingy as well.

So here are my questions - do we go gluten free (myself included since we are breastfeeding still) and see what happens? I can't imagine my 6 yr old and husband wanting to do this as well.... It is such a huge undertaking and reading the boards, it seems that she doesn't have the intense reactions that many of you have. Of course I want her to be healthy and will do what is necessary, but I am not convinced that it is gluten and since there is no reliable test for a child her age, I am at a loss at what to do next.

Any suggestions would be greatly appreciated. :)

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi,

Sounds like the problems we had a little while ago :) Your baby sounds like a Celiac.

I have an almost three yr old that lost 40+ percentages at her 9mth check up. Told not to worry. NOt Celiacs. The diarrhea started, the gas, big belly, terrible moods... by her two yr old bday she was still in 12 mth old clothes, hadn't grown at all, never slept through the night, woke up in the middle of the night starving hungry, still Drs said she was just petite. I don't believe babies should be classified as "just petite". So the battles started. (I have Celiacs). She was finally sent for bloodwork and sent to Gastro. Biopsy inconclusive and has the gene. So a lot of moeny and worry and still useless test results. Finally made her gluten-free against Drs demands and she is great now. Growing like a weed! Looks great.

In my opinion, take you and the baby off all forms of dairy and all forms of gluten. You need to be eating the baby's diet while you are nursing. Track the symptoms and height and weight. Pretty soon someone accidentally gives the baby a gluten item and there is a big reaction. That is your answer. Make the baby and you gluten-free/CF for a few months. Watch all CC. Then see if the baby has a reaction to gluten.

BTW, I do not believe the whole house has to be gluten-free too. Just follow some rules to avoid accidents adn contamination and it shoudl work out fine.

Good luck!

RainyZ Rookie
RainyZ
Posted
  • Author

Thanks for your response. I am seeing her pediatrician today and will talk with him about diet.

Do I need to stop dairy as well? For how long?

I appreciate your help.

RiceGuy Collaborator
RiceGuy
Posted

I think the recommendation to avoid dairy is wise. You can always reintroduce it later and see what happens. But initially the body needs to heal itself, and dairy is often a problem for Celiacs.

The only thing I'd add, is once you've talked with your doctor, go gluten-free no matter what they said. Your child will not be deprived of any nutrients. Besides, there are more gluten-free grains than there are gluten-filled ones.

RainyZ Rookie
RainyZ
Posted
  • Author

Thanks RiceGuy,

I talked to her pediatrician and told him that I felt that eliminating gluten (mostly - but not totally - lots of things I didn't know had gluten in them) was the reason she gained 1 pound in 5 weeks. Normal for her age is 4oz a month. Prior to that, she had not gained even 1 ounce in 6 months, so he was willing to listen.

He said that a gluten entropy is rare in children her age, but the most important thing is the results. If taking the gluten out of her diet gets rid of her symptoms and she gains weight well, then he said to take it out. Since she is still nursing, I also have to take it out. I don't mind. I was never a big fan of grain. I hadn't eaten wheat for a few days and then had a piece of bread - I felt like someone stuck a knife in my stomach. No problem giving it up after that. Plus, she also had a reaction from my breastmilk- red rimmed eyes, bad "undigested food" diapers - 3 the next day. Makes giving it up that much easier.

I will go ahead and get rid of the dairy as well. That will be hard for me. Cheese is such an easy snack and she loves it. Plus, I make my own whole milk yogurt for her and she eats that with flax every day. She doesn't have the undigested diapers after eating it, but I do want her digestive tract to be able to heal. I can reintroduce it later and see how she reacts.

I am really glad this forum is here. I've learned so much from all of these posts! :)

shayesmom Rookie
shayesmom
Posted

My dd was also 15 months old when we pulled gluten out of her diet. She'd been diagnosed FTT and we had run the gambit on trying all the stupid supplements, powders, oils the pedi gave us. Most of those seemed to make the problem even worse!

We did later discover that dd had a mild allergy to whey and to egg whites. However, none of her tests showed anything in regards to gluten or soy....and those were the two foods she had the most noticable reactions to. The doctors thought I was nuts to pull gluten out, but the proof showed up the first day in terms of mood, sleep patterns, appetite (it increased once we pulled those foods). And my FTT daughter gained a full pound in the first 2 weeks. She who wouldn't gain a pound in a 3-month period, gained 4 pounds in 3 months! She was back on the chart in no time, prompting the pedi GI to state she'd never seen a FTT case turn around so quickly. *No joke...Could it possibly be because I refused to run the supplemental path and went directly to removing common allergens???*

Hearing your pediatrician's comments on gluten enteropathy being rare....well, it just makes me cringe. There was a study published in Pediatrics several years ago (but in this decade) that reported, according to recent and random blood tests, Celiac Disease affected 1 in 33 to 1 in 57 children! How in the world can that possibly classify as "rare"??? Meanwhile, scientists who are researching gluten intolerance believe that as much as 30% of the population has serious health issues with gluten. Your pediatrician (and mine) need to attend some continuing ed classes on this topic. The only reason this problem is considered "rare" is because pediatricians aren't able to recognize symptoms. Nor have any of them picked up on the basic fact that infants cannot digest grains properly until they get their first molars. We shouldn't be feeding infants cereal until the molars come in...period.

Oh well...at least your pedi is intelligent enough to pay attention to results. And ultimately, that's the most important thing.

Good luck with the elimination diet. And try not to sweat the dairy issue too much. If it's of any help....you may want to check out some vegan recipe sites in order to find some good dairy alternatives. Raw food sites and some paleo diet sites also provide some interesting alternatives. I don't know where you all stand as far as tree nuts....but cashews can make some excellent, creamy sauces and cheese-like substitutions.

RainyZ Rookie
RainyZ
Posted
  • Author

Thanks Vicky. From all that I read at this site and others, it didn't seem like a stretch that she could have an intolerance. She didn't have the drastic symptoms that other children seem to have, but there were often days that I didn't give her gluten products, not on purpose but because at this age she eats mostly chicken, veggies and fruits and breastmilk. I think it made it harder for me to pinpoint because her symptoms would come and go. I don't include it much in my diet because I get the brain fog and other digestive issues. I never really made the connection that it was gluten though. For me, I just thought it was wheat and bread in general. I always felt much better on low carb diets. I just didn't like the chemical substitutes for everything. I like that gluten free products don't do that. I can actually read and understand the ingredients on the labels. I imagine if it is hereditary, it would be from me.

I occassionally butt heads with my daughter's pediatrician. He told me at her 1 yr check up, when we found out she hadn't gained any weight at all, that I must be out of milk (I still breastfeed) and that I should supplement. I know I have milk and I told him so. I still have milk at 15 months. Women can have milk long after their children stop nursing! I asked about my diet affecting her and he shrugged that off. I knew I wouldn't get any proactive help from him, so I figured I would just do what I needed to do and report the results to him.

Thanks for the advice on tree nuts. I love cashews and cashew butter is a staple in our home. We don't even have peanut butter in our house. We all like almond butter instead. I will also check out some vegan recipes. I am not going to force my husband and son to go gluten free all the time, but if they want me to cook and shop for them, they will have to eat what I buy and fix. I don't intend to buy or use gluten products at all. We had Pamela's pancake mix this morning and they loved them! My husband even mentioned not having that horrid bloated feeling after eating pancakes.

One last question - one of the reasons she didn't have much gluten in her diet is that I make crackers with parmesean cheese and sunflower seeds. I know parmesean is cheese, but am wondering if you or anyone has used a parmesean substitute and if it cooks the same?

Lastly, how long do I have to wait to re-introduce dairy?

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shayesmom Rookie
shayesmom
Posted
One last question - one of the reasons she didn't have much gluten in her diet is that I make crackers with parmesean cheese and sunflower seeds. I know parmesean is cheese, but am wondering if you or anyone has used a parmesean substitute and if it cooks the same?

Lastly, how long do I have to wait to re-introduce dairy?

I'd imagine that you could sub in some nutritional yeast to get that "cheesy" flavor. When I make breadsticks, I sub in about 1 TBSP of nutritional yeast compared to 1/2 cup of Parmesan. You may want to throw in a couple of TBSP of either ground almonds or cashews as well. Cashews taste more buttery and complement the nutritional yeast quite well. I make my own cheese using cashews. And I also have a decent recipe for alfredo sauce that is gluten, dairy, and egg-free.

Vicky

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      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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