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

Just Want To Help My Boy!


Peta

Recommended Posts

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


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



Celiac.com Sponsor (A8-M):



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

Archived

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

  • 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. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,170
    • Most Online (within 30 mins)
      7,748

    Charlotta Herte
    Newest Member
    Charlotta Herte
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • 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.