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

Still Waiting For Diagnosis

cam'smom

Recommended Posts

cam'smom Rookie
cam'smom
Posted

I am so relieved to have found this site! And am desperately hoping that someone will be able to identify with my son's story.

It all started in January, I won't detail everything here, but my 1 year old had loose, stinky, huge stools with microscopic amounts of blood in them - usually about 4 nappies a day. The ped said it could be celiac but the blood test came back negative. However I cut gluten out of his diet and the stools decreased from 4 nappies a day to 1, and within a month were back to normal. So, he has been gluten free now for 6 months.

The only thing is we still don't know for certain that it is celiac. There have been a few times when he has eaten food with gluten in and then his stools are all loose and horrible again, with tiny black flecks in them. This also happened in the beginning and the doc tested them but said the flecks were not blood. Has anyone else experienced this? Once the stool firms up the flecks go away, so they seem to be related to when he eats the wrong food.

I am very careful with what I feed him and at one stage I was making him a gluten-free bread recipe that contained yeast. He started reacting to something and I am wondering if it was the yeast - has anyone heard of yeast being a problem with celiacs?

I would really appreciate it if anyone could respond if their little one's story is similar to mine. The ped said that celiac is very unusual and unlikely to be the problem, but it seems to me that it is the problem. And, she has no idea what else it could be.

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

Welcome to the board!

I hope someday they have a way to dx Celiac without blood/biopsy that is more certain. For now (especially with children under 6) the best we can do is test (and if Neg) try the diet. You have had a positive response to the diet and that is your answer to the problem. Thank goodness you caught it early before a lot of damage set in and other autoimmune diseases showed up.

Whether it is Celiac or Gluten Intolerance the solution is the same....gluten-free diet. If it were me and mine, I would ask for genetic testing for Celiac. Genetic testing DOES NOT dx Celiac. But my thinking (and this is just my opinion) is that if my child obviously responds poorly to gluten and has Celiac genes then I can feel really SECURE in my decision to keep him gluten free for as long as he lives with me. Having a Celiac gene does not mean you will develop Celiac. But with an obvious sensitivity and the genes, it just makes sense to avoid gluten.

At some point when you can no longer control his eating, he may decide to eat gluten foods (teen years are suspect) and if he reacts badly he will have to decide for himself if he wants to continue eating it (and if he wants to test for Celiac).

All you can do as a Mom is focus on the now and keeping him healthy until he is an adult. gluten-free sure looks like the right thing for you.

Ask the Ped if he can ease your mind even more by ordering the Genetic Test.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,881
    • Most Online (within 30 mins)
      7,748
    Sky Dancer
    Newest Member
    Sky Dancer
    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

    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...