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 Like Celiac Disease?

andarah

Recommended Posts

andarah Newbie
andarah
Posted

My DD is now 6 1/2.

We have been having a few problems since Christmas and we are trying to figure it out.

Here's her story:

She stopped growing properly at 12 months and fell off the growth charts for height, but her weight has always maintained the 25th%ile. The doctor has run tests and determined she will be about 5' 3", which is probably around the 25th%ile or a little taller. He feels she is supposed to be on the 25th, but her height is being stunted for some reason.

She started showing signs of incredible defiance at the age of 11 months.

When she was 3, she was dx with lactose intolerance. At the same time, a naturopath told us she was wheat intolerant, but he didn't do anything with her, other than listen to me talk about her. We took off wheat and saw no improvement, so we disnmissed his ideas.

We got control of her defiance around 3 1/2.

In the last 4 months, her defiance has returned with a vengence. She's also complained of stomach aches, almost daily, in the same period of time and she started wetting the bed, which is now a nightly thing. She was night trained for 4 years before this. When we do wake her up to use the toilet (now necessary to avoid bed wetting), she is so tired, that we are not able to wake her up. She also still has her `toddler belly'.

She has no constipation, diarhea, or other classic signs of a digestive problem.

Family history:

My father has diverticulitus and has had 1/2 his bowel removed because of perforations. My cousin has IBS and a few other cousins have lactose intolerance.

We've taken her to the doctor and she was given a clean bill of health. She had blood work done for her thyroid, blood sugar, and cell count. She has no problems, including infection. We've also had her seen by a psychologist because she has some classic signs of abuse. The psychologist does not feel that anything has happened to DD.

So, in our search to figure out what is going on, I've stumbled across Celiac Disease and it has struck a chord in us. We've decided to try going gluten-free to see if it helps her, but this is a major undertaking, esp because her brother is on an ADHD diet and it completely contradicts the gluten-free. So, if I'm off-base, I'd like to know.

Does this sound like celiac disease?

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

Celiac.com Sponsor (A8-M):


home-based-mom Contributor
home-based-mom
Posted

It definitely sounds like a possibility.

I don't know what an ADHD diet is, but if you start reading in here for very long you will find post after post after post from parents whose children stopped exhibiting ADHD behavior when they went completely gluten free, or when gluten free plus soy / casein / whatever else was necessary free.

You have nothing to lose and everything to gain by trying, because by your own words, what you are doing now is not working.

Welcome! Feel free to ask anything! :)

Ursa Major Collaborator
Ursa Major
Posted

Hi and welcome to these boards. Yes, your daughter sounds like an awful lot of kids with celiac disease. All her symptoms, including stunted growth and defiance, bed wetting etc. could be caused by celiac disease. By the way, so could her brother's ADHD, as ADHD is VERY common with celiac disease.

Maybe, in order to simplify things (and maybe help both of them at the same time) you could try BOTH of them on the gluten-free diet?

Also, celiac disease causes lactose intolerance!

If you want to really find out if your kids are gluten intolerant, you could have them tested with Open Original Shared Link. It cannot diagnose celiac disease as such (since officially you need to have blunted villi for a diagnosis), but they can identify gluten intolerance. Not everybody who is gluten intolerant exhibits the 'classic' symptoms. In fact, very few people with celiac disease do.

Breila Explorer
Breila
Posted

I only have a moment, but I wanted to chime and say that with the exceptions of the defiance and the bed wetting, your daughter's history sounds almost identical to my son's. I told his ped. I suspected celiac when he was 4 and was told I was overreacting, he was "normal", right after they told me he would be 5'10" when he grew up, and no man in my husband's family has been under 6' in living memory, heck his sister is 6'1", LOL.

We finally got a celiac diagnosis (from a very kind, understanding, and proactive ped.) over 3 years later when he started complaining daily of stomach aches.

andarah Newbie
andarah
Posted
  • Author

Thank you!

I will definitely continue with the gluten-free for my DD. I will continue with the ADHD diet for our son, and once he has many of his choices back after the elimination, we try him on gluten-free. I think I will try it when we try it with our DS. I am beginning to wonder if I am celiac and have never known.

gfpaperdoll Rookie
gfpaperdoll
Posted

I have not heard of the ADHD elimination diet. But it probably gets to the same place which is gluten free, dairy free, soy free & then eliminate other things as you notice them. Really once you eliminate gluten, dairy & soy, the child should be able to tell if he has problems with any other foods. I do recommend a total elimination of food dyes, artificial flavors & ALL artificial sugars, which pretty much gets rid of most processed foods.

yes, the hubbies are usually in denial, my son 37YO keeps his head in the sand...

I am sure you will learn a lot reading this forum!

andarah Newbie
andarah
Posted
  • Author
I have not heard of the ADHD elimination diet. But it probably gets to the same place which is gluten free, dairy free, soy free & then eliminate other things as you notice them. Really once you eliminate gluten, dairy & soy, the child should be able to tell if he has problems with any other foods. I do recommend a total elimination of food dyes, artificial flavors & ALL artificial sugars, which pretty much gets rid of most processed foods.

yes, the hubbies are usually in denial, my son 37YO keeps his head in the sand...

I am sure you will learn a lot reading this forum!

The ADHD diet that we are following eliminates: dairy, sugar, sucralose and aspertame, MSG, yellow fruits and vegetables, fruit juices, chocolate, no food colourings, no fried foods, no processed meat and no junk food (anything wrapped in celophane).

So, it doesn't eliminate soy or wheat. But, once we have most of these foods back from the elimination, we'll have a little room to move and then we'll do the gluten and soy.

We have noticed amazing things with our DS since we've been doing this - his eyes are brighter, he's noticing irony in situations, he's helpful, he's `on the ball'. None of it is academic, but we're seeing big changes at home.

I am definitely learning a lot as I read the forums and I getting so much help with recipes, school lunches, stocking my kitchen, etc.

Thanks everyone!!!!!!!! :D

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

That sounds great, please note that companies are now hiding MSG in the "natural flavor" ingredient.

Once you get rid of the wheat & soy, I think you are going to see huge improvements in your son. I am very happy for him!!

Archived

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

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


  • Member Statistics

    • Total Members
      128,039
    • Most Online (within 30 mins)
      7,748
    Shadowseeker
    Newest Member
    Shadowseeker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
×
×
  • Create New...