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Just Diagnosed
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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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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

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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.

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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

Link - What's it's like having Celiac's

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

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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

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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

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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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