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

Childhood Apraxia Of Speech -- Gluten Or Possibly Casein Connectiton?


New Mama

Recommended Posts

New Mama Rookie

Some friends whose son turned two a few months ago isn't really talking much. They took him in to be evaluated and they think he has Childhood Apraxia of Speech.

I'm wondering if there isn't a connection to gluten (of course, I think EVERY disorder has a connection to gluten, lol). He is very small for his age, had weird rashy stuff on his face/scalp for a long time after he was born (longer than the normal cradle cap/baby acne -- my son is a few months older so I was aware of that), and when he had a dirty diaper it absolutely STUNK. It smelled like the big D, but I never changed him so I don't know if he's had that issue. Oh, and despite being small for his age he's always been a big eater, pulling food off his parents' plates as a baby.

I love these people, but I have already suggested once that their son might have a food intolerance (because he is sweet and loving for a period of time and then BAM! he's pulling hair and pinching and hitting like a maniac) and I hate to harp on it. So if I make the comment I would like to have something to back it up, KWIM?

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



peanut369 Newbie

Bear with me on this long post, there's a reason for telling such a story - to answer your post

This is long, I know, but there's a response here about getting your friends to trial the child to gluten-free before he's older.

Five years ago there was a special on 20/20 or 60 Minutes about Gluten Intolerance. This was the same time period that my middle daughter was almost 5, and doctors were considering whether she was in the Autism spectrum. She had severely delayed speech, talked and sounded like she was speaking Chinese, would have absolutely RANDOM tantrums, or spacy spells, or be extra lovey, for no reason WHATsoever. A close friend called me to tell me this special was on. The child they were describing on this Gluten Intolerance special was EXACTLY like my daughter. Call her Peanut2. After about 4 months of discussing with doctors, we finally found out the 'right' blood test of the time, and she tested positive. "It's a weak positive," I was told, and wasn't given much assurance that going gluten-free would really help her. They were sympathetic like they would be if I was dealing with a severely MR child and in denial. Well, at that point, Peanut2 was pretty sad off. Peanut2's behavior resolved within about three months of going gluten-free. Her stools straightened out, her speech TOOK OFF, and she is now a fairly well adjusted (though still extremely ...independent) young lady.

I let us stop the gluten-free diet when it seemed like maybe that wasn't really what the whole problem was after all. All four of us (three girls ages 4-8, and myself) went gluten-free but later doctors convinced me to try Miralax on one, Cerave on another, and liver medication and treatment for gastric paresis on me. Without a firm diagnosis I guess the willpower wore off, and I was told to do gluten-free if I felt like it, but there was no medical reason.

It's been almost two years eating normal again, and am I sick! I have fatty liver, thyroid issues, supposedly insulin resistance, chronic pain in my back and hips when I sleep. The mental confusion that crept up on me over the last few months, though, put me over the edge. I couldn't function at work. On a long-shot, I tried going gluten-free. Within a week EVERYTHING began to resolve. My weight has even started coming down (it had crept back up as my liver was starting to grow again).

Part of the confusion I mention is I can't get words out right. Sometimes I pick the wrong word, sometimes I garble the sounds. I also get quite agitated, irritable, and just plain pi$$t off. Forgetful, too.

What this has to do with Peanut2 is that I am now terrified that she may have a relapse, or worse. My relapse proves to me beyond any doubt that I have to stay gluten-free. Now what do I do for the girls? Peanut3 loves her pizza SO BAD (is a HUGE eater but slender. Another sign to suggest she should be gluten-free) and Peanut1 is a 12 year old strong-hearted, self-fulfilling, mother-knows-nothing girl that gets the 'plug-em-ups' but has already declared she'll never go gluten-free again. Like, hospitalizingly bad.

If your friends even think the child might need a gluten-free lifestyle, it doesn't hurt - and the benefits can be life changing for a child who is mentally, physically, behaviorally, and/or speech inflicted by Gluten Intolerance. I waited too long to get firm about living gluten-free, and it may be too late for the 12 year old. Peanut2 is young enough to persuade, but just barely.

peanut369 Newbie
Some friends whose son turned two a few months ago isn't really talking much. They took him in to be evaluated and they think he has Childhood Apraxia of Speech.

I'm wondering if there isn't a connection to gluten (of course, I think EVERY disorder has a connection to gluten, lol). He is very small for his age, had weird rashy stuff on his face/scalp for a long time after he was born (longer than the normal cradle cap/baby acne -- my son is a few months older so I was aware of that), and when he had a dirty diaper it absolutely STUNK. It smelled like the big D, but I never changed him so I don't know if he's had that issue. Oh, and despite being small for his age he's always been a big eater, pulling food off his parents' plates as a baby.

I love these people, but I have already suggested once that their son might have a food intolerance (because he is sweet and loving for a period of time and then BAM! he's pulling hair and pinching and hitting like a maniac) and I hate to harp on it. So if I make the comment I would like to have something to back it up, KWIM?

New Mama Rookie

Thank you for sharing your story. It's tough when kids are older and just don't believe that food can really have such a big effect on you. My nephew is nineteen, has ADD and psoriasis and numerous other issues and I really think his problems are dietary in nature -- or at least that they could be much relieved by a change in diet. But he scoffs at his mother (my sister) who went gluten-free after I suggested her rash looked like dermatitis herpetiformis. Her rash AND migraines have subsided and she's convinced -- but her kids laugh at her.

Hopefully your daughters will figure it out sooner rather than later.

I did mention to my friends that a gluten intolerance could cause issues like their son has, but I can't do much more than that. The mother is a family practitioner, which I suppose could be good or bad. She's fairly open to new ideas, though.

Thanks again!

peanut369 Newbie

It's hard to fight science with reality these days.

:(

  • 2 weeks later...
RARMES Newbie
Bear with me on this long post, there's a reason for telling such a story - to answer your post

This is long, I know, but there's a response here about getting your friends to trial the child to gluten-free before he's older.

Five years ago there was a special on 20/20 or 60 Minutes about Gluten Intolerance. This was the same time period that my middle daughter was almost 5, and doctors were considering whether she was in the Autism spectrum. She had severely delayed speech, talked and sounded like she was speaking Chinese, would have absolutely RANDOM tantrums, or spacy spells, or be extra lovey, for no reason WHATsoever. A close friend called me to tell me this special was on. The child they were describing on this Gluten Intolerance special was EXACTLY like my daughter. Call her Peanut2. After about 4 months of discussing with doctors, we finally found out the 'right' blood test of the time, and she tested positive. "It's a weak positive," I was told, and wasn't given much assurance that going gluten-free would really help her. They were sympathetic like they would be if I was dealing with a severely MR child and in denial. Well, at that point, Peanut2 was pretty sad off. Peanut2's behavior resolved within about three months of going gluten-free. Her stools straightened out, her speech TOOK OFF, and she is now a fairly well adjusted (though still extremely ...independent) young lady.

I let us stop the gluten-free diet when it seemed like maybe that wasn't really what the whole problem was after all. All four of us (three girls ages 4-8, and myself) went gluten-free but later doctors convinced me to try Miralax on one, Cerave on another, and liver medication and treatment for gastric paresis on me. Without a firm diagnosis I guess the willpower wore off, and I was told to do gluten-free if I felt like it, but there was no medical reason.

It's been almost two years eating normal again, and am I sick! I have fatty liver, thyroid issues, supposedly insulin resistance, chronic pain in my back and hips when I sleep. The mental confusion that crept up on me over the last few months, though, put me over the edge. I couldn't function at work. On a long-shot, I tried going gluten-free. Within a week EVERYTHING began to resolve. My weight has even started coming down (it had crept back up as my liver was starting to grow again).

Part of the confusion I mention is I can't get words out right. Sometimes I pick the wrong word, sometimes I garble the sounds. I also get quite agitated, irritable, and just plain pi$$t off. Forgetful, too.

What this has to do with Peanut2 is that I am now terrified that she may have a relapse, or worse. My relapse proves to me beyond any doubt that I have to stay gluten-free. Now what do I do for the girls? Peanut3 loves her pizza SO BAD (is a HUGE eater but slender. Another sign to suggest she should be gluten-free) and Peanut1 is a 12 year old strong-hearted, self-fulfilling, mother-knows-nothing girl that gets the 'plug-em-ups' but has already declared she'll never go gluten-free again. Like, hospitalizingly bad.

If your friends even think the child might need a gluten-free lifestyle, it doesn't hurt - and the benefits can be life changing for a child who is mentally, physically, behaviorally, and/or speech inflicted by Gluten Intolerance. I waited too long to get firm about living gluten-free, and it may be too late for the 12 year old. Peanut2 is young enough to persuade, but just barely.

You have made me realize this could be my baby girls whole problem.Thank you so much for writing this.Maybe now i know the problem why she is not potty trained and speech delayed and does sparatic mean spells.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,575
    • Most Online (within 30 mins)
      7,748

    Ahorne
    Newest Member
    Ahorne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com, @Rejoicephd! 1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten Free" symbol on a package that is even better, indicating that there is no more than 10ppm of gluten.  2. When you are choosing "gluten free" items from a restaurant, realize that it only means gluten is not an intentional ingredient. It does not rule out CC (Cross Contamination) caused by those cooking and preparing the food back in the kitchen who may be cooking it on the same surfaces or in the same pots/pans as they are gluten containing food items and handling it with the same utensils they are handling gluten-containing food. 3. About 8% of celiacs react to the protein avenin in oats as they do the protein gluten in wheat/barley/rye. In addition, some cultivars of oats actually contain the protein gluten. Many celiacs also react to the protein casein in dairy products as they do gluten or they are lactose intolerant. Eggs, soy and corn are also common "cross reactors" in the celiac community but oats and dairy are the most common.
    • Rejoicephd
      Hi everyone! I was diagnosed with celiac a year ago (they confirmed it on endoscopy following a positive TTG antibody and positive genetic test). I thought the gluten free diet thing wasn’t going to be that hard of an adjustment, but man was I wrong. I’m a year in and still having issues in terms of accidentally glutening myself and getting super sick (I’m starting to think I need to just bring my own food everywhere I go). And also even when I am eating foods that say they are gluten free, I’m still dealing with an upset stomach often. My GI doc said I should avoid dairy as well, and the internal medicine doc said my gut microbiome might be messed up from all of this. I’m just looking for some answers/ideas/tips on what additional things I can do to feel better. Do you all do avoid additional categories of foods beyond just gluten to help alleviate symptoms? Thanks! 
    • trents
      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
×
×
  • Create New...