Jump to content

  • 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

Is My Daughter A Celiac ?

debs626

Recommended Posts

debs626 Newbie
debs626
Posted

Hello. My daughter (11) has been ill since June 2006, she started with what I thought was a tummy bug and couldn't seem to shake it of making her lose weight. In mid November she started with very bad tummy pains, high up, worsening after eating. Her stools are very pale looking and of all funny consistency. 3 weeks after this started she became well again and pains went away. During Christmas the pains came back again, she has become very thin, drawn, dark under her eyes, very tired all the time, very itchy rash all over but mainly hands feet knees.

I have been to the doctors with her and have seen 4 doctors, first suspected indigestion and gave her gaviscon, after no improvement I went back to same dr and he sent her for blood test which all came back fine. 2nd said to go home and give paracetamol, 3rd said its just a tummy bug and allergy rash. On my 4th visit I suggested a gluten intolerance and doctor wasn't sure but said to go for blood test to rule out.

celiac disease is in our family.

what I would like to know is, could the symptoms go away and come back ?

I have started her on a gluten free diet but not seen any massive improvement yet but its only been 3 days and I'm not sure if she is getting contaminated or not.

What do I have to look for on food label's ?

is there a UK version of this site ?

any advice would be appreciated. Thanks in advance

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted

Hi Debs, Welcome to the boards!! :)

I'm in the UK too (London) and my hubby and son are coeliacs.

My son was diagnosed at age 13 - and although he never really had stomach pains he also had pale stools, tiredness with dark rings under the eyes.

Your daughter does sound as if she has alot of coeliac symptoms.

I also think that it is quite possible for the symptoms to wax and wain - as they did in my son and hubby.

Now I notice that you've put your daughter on a gluten-free diet.

Of course it's your choice but do you know that to get tested for coeliac you must be eating gluten??

As it's only been a few days why not ask your GP to run a 'coeliac screen' as she has alot of the symptoms and it is in your family?

OK , -I've just reread your post...are you saying your daughter has had the blood test for coeliac but it came back negative???

Blood tests are NOT always 100% accurate - my husband had a neg blood test for coeliac but a biopsy showed he DID in fact have celiac disease.

Has any doc suggest an endoscopy with biopsies??

I have got alot of useful info from this site and one that I use which is UK based (see link) which is great if you want to know about a particular food.

Open Original Shared Link

Another idea is to contact Coeliac UK who might be able to advise you and also supply a handbook listing thousands of 'safe' gluten-free foods Open Original Shared Link

Feel free to ask any more questions! :)

Good luck!

debs626 Newbie
debs626
Posted
  • Author

Hiya nikki and thanks for your reply.

The first set of blood tests were not for coeliac. We went for coeliac blood test on weds before we started the gluten free diet. After reading some of this forum I'm not sure as to continue with the diet as, like everyone says, it will interfere with any biopsy she will need. I will ask our Dr but I don't think he will know as I think he was clueless about the coeliac disease until I mentioned it. On our last visit to the Dr he said if there were no improvements within 2 weeks that he would refer her to a pediatrician.

Also, don't know how I could fail to mention this, my daughters passing wind is very fowl smelling too .......... at the time of typing this I have all windows open trying to blow through.

As it happens I have not seen my daughter all day as she has been out with relatives but when she got home tonight, she said her tummy pains were a little better, she seemed in better spirits and she had a little colour in her cheeks too, so maybe the gluten-free diet is having an effect :)

Thanks for the links too nikki, I will go and take a look now.

nikki-uk Enthusiast
nikki-uk
Posted

Debs, I know all about the foul wind!! :lol:

Very common symptom in celiac disease!

I should mention that in the UK docs generally prefer a coeliac to be biopsy proven.

After my son had positive bloods for celiac disease I really pushed for an endoscopy appt with a gastro paediatrician as I knew from my hubby that without a biopsy most docs dismiss the fact that they are a coeliac.

Also - without being biopsy proven you generally do not get any follow up care and are NOT entitled to any prescription gluten-free foods ( which believe me helps with the cost of the diet!)

I suggest that once you get your daughters blood results (whether they be positive or negative) you ask for her to have an endoscopy with biopsies - (biopsies can also rule out any other possible causes)

Your daughter would need to be on a high gluten diet for at least 6 weeks BEFORE the endoscopy.

Take care :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    2. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    3. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    4. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    5. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.