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

Very Confused About 3 Yr Old

Busybmom

Recommended Posts

Busybmom Newbie
Busybmom
Posted

I have a 3 year old little boy that has been having gi issues since he was about a 1 year old. He has had several biopsies of the small intestine that has showed his villi is blunted. But his blood test has came back negative. He has severe ftt and got a gtube at 18 months for failure to thrive. He still struggles with his weight even receiving lots of formula. There are days he has bad diarreah. His gi is at a loss so he is sending us to an celiac specialist. Any advice is much welcomed!

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

Celiac.com Sponsor (A8-M):


Ollie's Mom Apprentice
Ollie's Mom
Posted

I'm not as well versed on testing as others here (who I am sure will chime in), but the biopsy results came back positive for celiac didease, correct?

You do not need a positive on both the blood workand biopsy for a ddiagnosis. And since doctors seem to still consider a positive biopsy to be the "gold standard" for a celiac diagnosis, I'm not sure what the confusion is? Unless there is concern that the blunted villi are being cause by something other than celiac? (I don't know if that's possible)

False negative blood tests are fairly common, especially and children, and also depending on what tests were actually run (ie - was the full celiac panel run? Or only a few of the tests?)

Your son's issues seem to be severe. I would ensure that a full blood panel was run asap, and if not, I'd get more blood drawn for those tests right away. Then I'd go gluten-free with him right away. I wouldn't wait for an appointment with a celiac specialist first. I'd just make sure his GI was following the gluten-free trial (including tracking his weight and digestive symptoms) so that it is in his record for the celiac specialist to see.

(I'm sure someone will post the full list of blood tests for the celiac panel).

Good luck, and please keep us posted!

tarnalberry Community Regular
tarnalberry
Posted

Rarely, dairy can cause blunted villi as well, but celiac blood tests will of course come back negative. What dietary changes have you tried?

Busybmom Newbie
Busybmom
Posted
  • Author

I'm not sure what blood test have been done. (Ill have to look at his records) but he was dairy free for about a year and everything was still the same. We tried gluten free for about a month and everything was the same. So his gi doctor told me to take him off the diet. (I thought he would need to be on it longer)

mushroom Proficient
mushroom
Posted

Yes, ideally you should trial the diet for at least 3-6 months to evaluate its effect. What about celiac diagnosis does your doctor not understand? For years we have been told that biopsy trumps blood work, and now your doctor seems to be telling you that because his blood work was negative he is not celiac? There are known to be false negatives on blood work. However, as tarnalberry says, it is possible to develop villous blunting from causes other than celiac, the most common alternative being dairy. Does he seem to have problems with dairy?

I would accept the specialist referral to try to get to the bottom of it, but if when you get to the bottom there is no definitive diagnosis I would still do a six-month trial of the diet, along with dairy free, and see how he goes.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,142
    • Most Online (within 30 mins)
      7,748
    Jeaneneve
    Newest Member
    Jeaneneve
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • 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.
×
×
  • 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.