Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    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!

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
Busybmom Newbie
Busybmom
  • Author
Posted

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)

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,089
    • Most Online (within 30 mins)
      7,748
    AnaRRR
    Newest Member
    AnaRRR
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
×
×
  • Create New...