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

How Long For Villi To Recover?

RoseRobin

Recommended Posts

RoseRobin Rookie
RoseRobin
Posted

My son received negative results to his blood tests, but we are still unclear about whether or not he could be celiac, as he had tried going gluten free for several months and then went back on gluten for only two weeks before the test. I'm wondering if we should try to get an intestinal biopsy done--or would that be pointless now that he has been back on a gluten-free diet for two weeks already? If damage has occurred to the villi but one then goes gluten-free, how soon might the damage be repaired and therefore be unobservable through a biopsy?

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

Celiac.com Sponsor (A8-M):


Rebecca's mom Rookie
Rebecca's mom
Posted
If damage has occurred to the villi but one then goes gluten-free, how soon might the damage be repaired and therefore be unobservable through a biopsy?

It would really depend on how much damage might have been there to begin with. Our youngest daughter was diagnosed a year ago with both gliadin and tTG numbers >100 (pretty high for a 7-year-old). At her last check-up a couple of weeks ago, her tTG was 6 (<5 is negative for villi damage).

Generally, the higher the tTG number, the longer it will take for the villi to recover. However, I believe I read somewhere recently that there can still be some degree of intestinal damage in people who have been diagnosed with celiac disease, even with a "normal" tTG number.

You may want to have a genetic test run - most doctors' offices can order this; you don't need to have an independent lab run it. The name of the test that you want to ask for is HLA Typing for Celiac Disease. That will tell you if your son carries one of the genes which are currently known to be associated with 96% of celiac disease cases.

Just be aware, however, that 40% of the US population carries one or both of these genes, so a positive genetic test DOES NOT mean that a person has celiac disease, just that they are at a higher risk of one day developing it. No one is really sure what triggers celiac disease to activate in some people and not in others. If a person carries one of those genes, they are probably more likely to have some level of gluten sensitivity, and may find a GFD to be beneficial.

It is possible that your son is Non-Celiac Gluten Sensitive (NCGS) - that is, he responds favorably to a GFD, yet won't test positive for celiac disease. Many celiac disease researchers are starting to acknowledge that this is a much larger group of people than originally thought. Hopefully they will be able to develop a test (other than a trial GFD) which will be able to detect this sometime in the future. What they do know is that celiac disease is the most extreme "form" of gluten sensitivity - the tip of the gluten "iceberg", if you will.

If your son does well on a GFD, you may just want to "label" him NCGS and go merrily along your way - my husband and one of our other daughters are feeling MUCH better on a GFD, and neither one of them carries one of the two main celiac disease genes (they do, however, carry one of the genes seen in most of the 4% of Celiac patients who don't have either gene.......). They both had positive tTG results on a stool test, but not on their bloodwork.

That (plus feeling better) was enough to convince my DH to continue on a GFD - he embarked on it under protest, but he immediately started to see improvements in his health. He is now fully committed to following a GFD, and even tells friends and coworkers how beneficial it has been for him! And believe me, we (the whole family) are the FARTHEST thing from health nuts that you could find........

I hope you are able to find some answers. The best advice that I can give you is to trust your instincts - if a GFD is giving you good results, then just continue with it, regardless of your son's test results. It certainly won't hurt anything - there are no known adverse side effects to this diet!

latteda Apprentice
latteda
Posted

Can a PCP do a HLA Typing?

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.