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

8 Year Old Awaiting Results

macyashlynn

Recommended Posts

macyashlynn Newbie
macyashlynn
Posted

My 8 year old just had the blood test for celiac today. I am new to this process and not sure what the steps are to diagnosis. My 25 year old brother was diagnosed 5 years ago and has very severe celiac (gluten and dairy free diet has helped but stress also is making him sick).

My daughter has had bowel problems for 5 years. Very loose and fowl smelling bowels. At time she cannot seem to control them. She uses the restroom immediately after eating, sometimes during a meal. She has bowel movements 3-6 times per day. She has lately been complaining of stomach pain (which is why the DR. is finally testing her).

My questions are for after the results. If the blood test is negative should I move forward with more testing? And if positive will more tests be done to confirm? My Dr. seemed to think that my daughter has the flu (for months on end???). He only ordered the test at my insistence.

Any advice and/or tips would be greatly appreciated.

Thanks!

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

Celiac.com Sponsor (A8-M):


Arpita Apprentice
Arpita
Posted

I'm sorry your daughter is so ill, and that's so hard on her and you. I would search online for some information, on this cite, on webmd, celiac.org, for starters. One issue is where the blood test is done (I think Mayo is good), and if you get all three tests. I would look into peoples stories here, as you will see that many have diagnosed celiac with negative results, and others are gluten intolerant and have improved with diet. It would be ideal to find a doctor who is more knowledgeable about celiac, or who at least is younger and where the doctor uses the computer to search for and enter information. What a drag when you have to be insistent at him doing tests! I would make sure to get all copies of the doctor's notes and tests. It is very informative to see what they write down and to look at the normal range etc. yourself. I have had errors with another health issue, and more than once had a doctor tell me its "nothing," and then see that on his chart, he wrote down "it could be..." but didn't tell me those considerations! I have more specific information on location of testing, etc. in my file, but I can't get to it now. Wish you both the best.

EBsMom Apprentice
EBsMom
Posted
My questions are for after the results. If the blood test is negative should I move forward with more testing? And if positive will more tests be done to confirm? My Dr. seemed to think that my daughter has the flu (for months on end???). He only ordered the test at my insistence.

Any advice and/or tips would be greatly appreciated.

Thanks!

You need a new doc! The "flu" for months? That's crazy. With your family history and her symptoms, I'd actually be surprised to hear that your dd doesn't have celiac disease. If you have access to such, I'd look for a good pediatric GI that has knowledge of celiac disease. If the blood test is positive, the next step would be an endoscopy with intestinal biopsy. A positive biopsy is the "official" proof of celiac disease. Even if the blood test is negative, you could press for a biopsy. There are lots of people on this forum who've had negative blood tests and positive biopsies. There are also people who've had positive blood work with negative or inconclusive biopsies. There's rarely any black and white about celiac disease testing - only shades of gray, it seems. If the doctors aren't cooperating or you have poor access to them, you could always try your dd on a gluten free diet and see what happens.....but do know that she needs to be actively consuming gluten for the biopsy to be accurate. We took my 9 yo dd gluten free before I really even understood what celiac disease or the testing was all about, and she got better very quickly. We opted not to put her back on gluten for testing and so we don't have an "official" diagnosis. We did do fecal testing through Enterolab, which showed that she's gluten (and casein/dairy) intolerant, but honestly, it would be easier in some ways to have an "official" diagnosis. Whatever you choose to do, educate yourself as much as possible and be your dd's advocate (as it sounds like you already are!) Many (or most) doctors just don't have celiac disease on their radar in any meaningful way, so you pressing for the right tests and being knowledgable is very important! Good luck to you!

Rho

cruelshoes Enthusiast
cruelshoes
Posted
My questions are for after the results. If the blood test is negative should I move forward with more testing? And if positive will more tests be done to confirm? My Dr. seemed to think that my daughter has the flu (for months on end???). He only ordered the test at my insistence.

Diagnosis generaly consists of 3 elements (with some variations):

-positive results on the bloodwork

-positive results on the biopsy

-positive results when removing gluten from the diet

Doctors are notorious for ordering the wrong blood tests and often don't do them all. PLEASE get a copy of DD's bloodwork results and post it here for the real experts to look at. Even if the MD says the bloodwork is negative, it may be because he did not run the right ones. Nobody here is a doctor, but there are many who have had their share of results, both positive and negative.

If the blodwork is positive, your MD will most likely refer you to a GI doctor for the endoscopy. Many times, a doctor will not give a diagnosis if the endoscopy is not done. I had the endoscopy done on my then 6-year-old son, and would do it again if I had to. This is a lifetime diet, and I wanted the diagnosis behind me. Also, if you want to get a 504 plan for DD while she is in school, you will most likely need a diagnosis.

Keep your chin up! There are people here to help and answer questions.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.