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Just Diagnosed

mamarara

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mamarara Newbie
mamarara
Posted

Hi my almst 6 year old son was just diagnosed by his dr that he has Celiac. I am trying to do as much research on this disease as possible. i want to make sure that this is really what is wrong. I was wondering if anyone could give me some of the symptoms of Celiac? I do trust my Dr as she also has Celiac but i just want to make sure. i also was tested and will know the results by Wed or Thurs. my husband will not be tested as of yet because he is in Iraq still.

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lauradawn Explorer
lauradawn
Posted

Im sorry to hear that. It's so hard to see little ones with such problems. Im sure during your research you will find that there are hundreds of symptoms that can be associated with Celiac. It depends on each person.

How did your Dr diagnose him?....

Im sure over a matter of time you will find quickly if that is his problem. most poeple after gluten-free begin feeling better very qucikly. I hope that is the case with your son.

Laura

mamarara Newbie
mamarara
Posted
  • Author

I brought him for his 6 year checkup and the dr noticed that his back teeth were black so i told her that the dentist told me his teeth came in without the enemal on them. I also have been battling constant constipation with him since he was about 2yrs old. He also complains that his tummy hurts. So she ordered a blood test and when the results came back she told me that he had Celiac Disease. She gave me some things to read and what I needed to do and not do. But I just wanted to make sure without going through the biopsy with him.

Guest jhmom
Guest jhmom
Posted

Hi Mamarara, welcome to the board! If your son already has a positive blood test there would be no reason for him to endure a biopsy through endoscopy.

First of all I would suggest surfing this message board under "pre-diagnosis, testing and symptoms" there may be some listed that are not on the list below:

Here are some links that have been helpful to me:

gluten-free Products List

Support Groups in US

Open Original Shared Link

What are the symptoms of celiac disease?

There is no typical celiac. Individuals range from having no symptoms (asymptomatic or "latent" forms of the disease) to extreme cases where patients present to their physicians with gas, bloating, diarrhea, and weight loss due to malabsorption.

In between these two extremes lie a wide variety of symptoms that include:

Diarrhea

Constipation

Steatorrhea (fatty stools that float rather than sink)

Abdominal pain

Excessive gas

Any problem associated with vitamin deficiencies

Iron deficiency (anemia)

Chronic fatigue

Weakness

Weight loss

Bone pain

Easily fractured bones

Abnormal or impaired skin sensation (paresthesia),

Including burning, prickling, itching or tingling

Edema

Headaches*

Peripheral Neuropathy* (tingling in fingers and toes)

Individuals have reported such varied symptoms as:

White flecks on the fingernails

Fuzzy-mindedness after gluten ingestion

Burning sensations in the throat

In children, the symptoms may include:

Failure to thrive

Paleness

Querulousness, irritability

Inability to concentrate

Wasted buttocks

Pot belly with or without painful bloating

Pale, malodorous, bulky stools

Requent, foamy diarrhea

I do hope some of this information is helpful to you and that your sons health begins to improve soon! :D

gf4life Enthusiast
gf4life
Posted

Dental enamel defects are also a symptom of Celiac and it is recommended by the University of Chicago Celiac Disease Center that ALL children with dental enamel defects be screened for Celiac Disease. I am glad your doctor caught on quickly. There really is no reason to put him through the biopsy. His symptoms and the blood test are enough and the real test is how well he responds to the diet. All three of my kids have lots of crowns in their mouth and the dentist was getting very frustrated with us until he found out that we are all gluten intolerant. Now he knows it is genetic and I am hoping we will all get less cavities now that we can all be gluten free.

Let us know how your test comes out. Are you symptomatic at all?

God bless,

Mariann

DLayman Apprentice
DLayman
Posted

Boy this must be tough with you dealing with this alone! I hope your husband stays out of harms way over there! My brother in law just came back.

A book that you will find helpful is Kids with Celiac disease by Dana Korn.

I found it very helpful!

Do let us all know if there is anything you need!

Denise

mamarara Newbie
mamarara
Posted
  • Author

Hi I just wanted to let everyone know that my test result was negative. That is a good thing for me but not my son. Now we are just waiting to see the results from my sister. I will let you know.

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  • Recent Activity

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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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