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New To This With Some Questions

jenilee

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jenilee Newbie
jenilee
Posted

Well starting around the time we introduced solids my son started having A LOT of night waking. He was breastfed and I don't do CIO with my kids (thankfully.) My 3 1/2yo has a corn intolerance so I was familiar with some of the symptoms.

So my now 19mo would wake up screaming, I would pick him up, he would burp some wet sounding burps and then pass back out. Only to wake an hour later and do the same thing. Each time his voice getting more and more hoarse.

Fast forward a few months. I am finally frustrated at trying to figure out what is causing this since he hadn't had anything crazy as far as baby foods and was still breastfed ( and while exclusively breastfed until 6mo he had NO intestinal reactions to anything I ate). I ask our pediatrician for a blood test. She hesitates, but agrees. Everything comes back negative. We did lactose, milk, dairy, wheat, eggs, barley, gluten, etc. All the most common ones. Including corn since that bothers my 3yo.

So I still keep evaluating mine and his diet (still bf'ing) trying to figure out what is causing this for him.

I FINALLY figured it out when he was about 15mo. Diary I had suspected so he hasn't had any of that (no yogurt or anything) since he was like 9mo. And then I figured it out that its gluten. That was only after my suspicion of BARLEY bothering him and doing some research and seeing that its a common gluten food. (Had the barley suspicion after giving him a chicken and barley baby food).

I have since cut gluten out of both of our diets (yes he is still bf'ing at 19m).

So the big question is, with a negative blood IgG test to wheat/gluten/barley/oat does that rule out an actual "allergy" to gluten? Is his issue just a digestive sensitivity issue? My ped said he is not a child who looks as though he has celiac, as they usually fail to thrive. But it is VERY clear that he can't digest this stuff. She hasn't tortured him with any testing since in the end it doesn't matter, he CAN'T have the gluten.

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shan Contributor
shan
Posted

If it was my son, i would keep hime off gluten till about 3 and then do a test on him - either challenge him if you don't care for an official diagnosis, or try him on it for longer and do the testing then. The reason i say about 3, is so that his brain has developed, and he wont have developmental issues - like speech delays coz his brain isn't getting the nutrients that he needs!!

Ursa Major Collaborator
Ursa Major
Posted
My ped said he is not a child who looks as though he has celiac, as they usually fail to thrive. But it is VERY clear that he can't digest this stuff. She hasn't tortured him with any testing since in the end it doesn't matter, he CAN'T have the gluten.

Apparently your ped is very ignorant of celiac disease (no surprise here, most are).

MOST children with celiac disease are NOT failure to thrive and don't look like they have celiac disease at all. Their tests are often negative because they haven't been around long enough for the gluten to destroy the villi yet to the point of being deathly ill and testing positive.

The babies and toddlers that test positive usually are at the verge of death.

In children under six trying the diet is the only truly reliable test. Your son was having problems when eating gluten, and those problems went away when you stopped feeding him gluten. Therefore he is at the very least gluten intolerant and shouldn't be eating it, which you have obviously figured out already. Good for you. You have prevented him from getting very ill and from probably ending up with failure to thrive down the road.

Darn210 Enthusiast
Darn210
Posted
My ped said he is not a child who looks as though he has celiac, as they usually fail to thrive. But it is VERY clear that he can't digest this stuff. She hasn't tortured him with any testing since in the end it doesn't matter, he CAN'T have the gluten.

Everyone was shocked when my daughter's blood test came back positive. I can't tell you how many times I heard the phrase "She doesn't look like she has Celiac disease."

My daughter's PedGI said that when he first started (not that long ago), they used to see about three kids a year with distended bellies and skinny limbs. You look at them and say they need to be tested for Celiac and no big surprise, the test would come back positive. Now, the practice he is in routinely screens kids for Celiac when they have "general" GI issues that aren't obvious where it's coming from. He said now they diagnose about one child per week with Celiac. That means the other 49 kids/year didn't look like they had the disease.

If your child does better off gluten, then I think that's the answer. You may find down the road you may be able to reintroduce dairy.

Also, as far as challenging . . . there has been great discussion amongst my daughter's docs and us at home on challenging her. I will say that the doc that we went to for a second opinion said that a gluten challenge should last for two months. If at ANY time GI issues start up again, the challenge is OVER, you don't keep ingesting gluten to get to the blood test you have your answers based on dietary response. So as you talk with the doctors, you might want to question them as if they will be open to diet response as a means of diagnosis. And to add a little bit more of our experience . . . my daughter (unintentionally) ingested wheat and had an immediate reaction. Even though, it wasn't the official challenge that we were planning in a couple of months, I consider the issue closed. I know for sure she ingested wheat and I know for sure she reacted. It's hard to remain gluten free without slip-ups, so when you have an instance where you know your child got ahold of something (and not just wondering if it was cc), then document the results for your own peace of mind and as evidence for your doc.

jenilee Newbie
jenilee
Posted
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Thanks everyone for the responses!!!

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    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

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      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
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      By knitty kitty · Posted

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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