Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Does This Sound Familiar?


sarahelizabeth

Recommended Posts

sarahelizabeth Contributor

We are still trying to figure out what is going on with my one year old son and celiac is something our GI Dr mentioned testing him for (along with hirschprungs) the last time we were in there so I am trying to gather more info before we got back June 1st. He's had problems with chronic constipation since he was pretty young but it got SIGNIFICANTLY worse at 5 months. Two things happened at 5 months... because of his poor weight gain we started supplementing him with formula (he'd been bf) and we started solids both to pack on weight. We had always thought the constipation was milk problem although so no improvement in the constipation when switching to Alimentum. He's has reflux and always spits up even still. He's very irritable and fussy but he's also had 8 ear infections in the past months (and tubes put in a month ago). His weight is in the 5-10th percentile and steadily dropping (he's only gained 4oz in the past 3 months). He's always been a very gassy baby which again we thought was milk related. When he poops now that he's on solid food it seems like everything comes straight through without being digested at all... I find whole pieces of everything he ate in his diapers and very little actual stool. We had allergy testing done on him because of the suspected milk allergy and everything came back negative (except peanut but thats a whole other issue). We got to green light to transition to whole milk and now are having alternating diarrhea and constipation in the same day??? Now I don't know what to think... I'd spent so long thinking this was all milk related! I always thought of straight diarrhea with celiac... is that wrong??? Are there other signgs and symptoms in a baby that I should be looking for??

ETA... he's been on Miralax daily since he was 8 months old for the constipation... we've had to up the dose several times now to keep him going.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



TCA Contributor

This all sounds so much like my daughter. We went through soooo much with her (even an unnecessary fundoplication surgery). If I could give you one piece of advice it would be this: Give him nothing but breast milk for a while and you go on the gluten free diet while nursing him. This literally saved my daughter's life. Formulas make her sooooo sick, and we have tried them all. The gluten in my breast milk was making her sick. The tests are very inconclusive for babies and this is an easy way to figure it out. What you eat goes straight to him, so this will help if gluten is the issue. If you feed him any real foods, make sure they are gluten free, but try to stick to breast milk if you can at all for a few days and then add things one at a time. I know it may sound nuts, but you will probably be amazed at the improvements if gluten is the issue. Doctors may discourage the idea (they thought I was nuts), but the improvements in her health cannot be argued with. Good luck and welcome to the board!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,999
    • Most Online (within 30 mins)
      7,748

    Maryam Goli
    Newest Member
    Maryam Goli
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
    • knitty kitty
      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
    • trents
      I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above.  You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet." Those statements seem to contradict one another. The celiac community as a whole understands that to be "on a strict gluten free diet" necessarily involves significant attention to cross-contamination. If you have not been strict with regard to CC up to now, it is difficult to say how that may have compromised your recovery and contributed to ongoing symptoms. Yet, even a significant reduction that falls short of gluten free can yield negative test results.
    • WildFlower1
      Thanks for your response! Yes, you’re correct that many of my symptoms improved when I went gluten-free, but issues like bone loss, infertility, hair loss, etc., seem to be the ones that haven’t responded. I’ve been on the gluten challenge for almost 7 weeks now, and I’m wondering how long I should continue it before testing again and making a final decision. I understand the benefits of eating gluten-free long-term, but I’m unsure how much longer to stick with the challenge to avoid another false negative celiac blood test.   What I would do differently if the test were confirmed positive is I’d receive a small amount of government help with gluten-free foods as a confirmed celiac. Doctors would be able to rule out further exhaustive testing. I’d also become even more strict about avoiding cross-contamination (for example, when eating at someone’s house, they may say something is safe, but it could have been cross-contaminated with gluten, or when going out to restaurants, they might say it’s fine, but it really isn’t). So, I would be extremely strict with cross-contamination if I were 100% confirmed as celiac, even though I’ve tried to be over the years but still seem to get sick.   Any advice on how long is typically recommended to continue the gluten challenge to avoid a false negative on the celiac blood test would be greatly appreciated!
×
×
  • Create New...