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Just Want To Help My Boy!


Peta

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Peta Explorer

I feel so frustrated!

I think my 10 year old may have celiac.

I took him to the doctor and asked for him to be tested...which she did.

Although the antibodies came back normal, the gene test came back all positive, and his bloodwork has some areas not in normal range.

He was referred to a large hospital for a biopsy. His appointment to discuss and then book this biopsy is not until February. I tried to get it earlier but the hospital states that only my doctor can push things forward.

Now, along with all his other symptoms, he has developed nose bleeds. I looked them up and noticed that they too can be associated with celiac due to lack of Vitamin K.

He is underweight, pale, tummy pains (although not all the time), dry eyes and lips.

I don't want to put him on a gluten free diet before diagnosis as I am not a doctor and do not know that there may not be another problem with him. I don't want to make that decision, and then find out that he had another problem.

Has anyone else had problems with nose bleeds associated with Celiac?

Peta


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Guest nini

I used to get nosebleeds all the time. And since going gluten-free haven't had them.

Unless they are planning on doing a biopsy (which with inconclusive bloodwork they probably will) and he needs to be eating gluten for biopsy. There is no other medical reason why NOT to try the gluten-free diet. The gluten-free diet can be a very healthy diet and if it helps great, if it doesn't help it won't affect other testing for other health concerns.

My daughters blood work was negative, and we DID NOT do the biopsy, but instead tried the diet and all of her health issues went away very quickly. She was 3 at the time. We suspected Celiac because I had just been positively diagnosed with it.

After all testing is done, try the diet regardless of test results.

plantime Contributor

It's the time of year for nosebleeds. My daughter and I get them from the dry air. You might want to try a vaporizer or humidifier, they worked wonders for us. Also, if you think your child is anemic (and your description of him certainly suggests it), you can start him on a vitamin supplement. A liquid one or one that goes under his tongue to dissolve would be easier for his body use. You sure don't need to wait for a test or a doctor to do that, it won't hurt any celiac tests.

Jestgar Rising Star

Can you ask to have him tested for vitamin deficiencies?

GlutenWrangler Contributor

February is a while away. It's too bad your son has to spend the holidays suffering. He needs to continue eating gluten for the biopsy to be accurate. If you are going to go ahead with the biopsy, I would talk with your doctor about maintaining your son's health until the day of the biopsy. I agree that testing for vitamin deficiencies might be a good idea. You just don't want to skew the results of the test. Hopefully your doctor will be helpful in this matter. Good luck.

-Brian

Peta Explorer

Thankyou for your replies.

I have rung and made an appointment with his doctor as I agree that I won't let him go on like this til February. I am insisting that his biopsy be scheduled earlier.

I will ask about the testing for vitamin deficiencies.

I have decided that as soon as he has had his biopsy I will start him on Gluten-free regardless... as you said, it certainly won't hurt and may make a world of difference.

THANKS AGAIN

Peta

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  • Posts

    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
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      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
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      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
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      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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