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

So So Confused


lmn001

Recommended Posts

lmn001 Newbie

My daughter has gluten intolerance as well as casein and soy intolerance. I suspect some form of sugar intolerance, but I'm not sure about that. She has been tested for celiac and is negative. She does not have the gene for celiac but does have a double gluten intolerance gene. She was strictly gluten free for about 3 months. She had some resolution of symptoms, but still had stomach aches, some reflux and constipation. A couple of weeks ago we had a death in the family. Because of this she was off of her diet. She had mild stomach aches, but nothing much more than her normal. She claims she felt no worse eating "normally" than she does eating gluten-free. She does not want to go back to the diet.

My confusion is why does she not have a more severe reaction? Could it be that her stomach issues never were caused by the wheat? Could it be that it just didn't catch up with her yet. She's only 12 and I don't want to make her eat this way if it's not really necessary. We don't even have a doctor to ask about this. None of her doctors see gluten intolerance as a real issue. They pooh pooh any connection unless there is celiac present.

Any advice would be appreciated - she tested positive on an IGG blood test and on the Enterolab stool testing

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



lynnelise Apprentice

It sounds like from the tests her body is making antibodies against gluten which would indicate that she needs to eliminate it. She may have still had symptoms due to a secondary intolerance like soy or dairy. She could've been experience withdrawl symptoms. Or maybe she just wasn't on the diet long enough to see results.

Link to comment
Share on other sites
txplowgirl Enthusiast

When she was gluten free her insides healed a bit. She was no longer making antibodies. As long as she keeps eating gluten those antibodies will build up and then she will definetly start feeling the after effects.

If she has a problem with gluten she can develop problems long term, a lot of auto immune diseases to infertility, depression so on and so on.

I also think she may have been in withdrawals to cross contamination to having other food intolerances.

Link to comment
Share on other sites
Waverlywoods Rookie

young strong people heal fast, and she may not have had that much damage to begin with campared to a thirty five year old like me, for example? As much as I hate to say it much of the gluten free section of stores consists of products that are quite heavy on starch and sugar which can encourge the wrong kind of intestinal flora, in particular if there is a history of antibiotic use, not breast fed ect... This problem is not solved with probiotic foods or supplements. Really a whole foods predominatley meat and vegetable diet is what is in order, with the occaisional gluten free treat if you see where I'm going with this. Are there any clues from past stool tests or anything to go on? Senstivity to mold, dust mites, diesel exhaust?

I have a daughter that is 7 and I know what's it's like to put healthy food in front of these kids, difficult! But at the same time, they seem to respond to positive change quicker and at least with sugar intake for example, a little lifestyle change can go a long way vs. An adult which may have to completely cut off all sugars and starchy foods for a long period of time to overcome an intestinal overgrowth.

In any case, you're a great parent for having caught the gluten intolerance at the young age and if it were me, I would remain vigilent and strict with it. Hope that helps

Link to comment
Share on other sites
frieze Community Regular

....and at 12 years old, it is possible she was never totally compliant with the diet.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748

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