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

Post Gluten Challenge


*Allie*

Recommended Posts

*Allie* Rookie

Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks :D


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



Celiac.com Sponsor (A8-M):



jennifer101 Newbie

Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!

Jmg Mentor
7 hours ago, *Allie* said:

Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks :D

Hi Allie and welcome :)

First off, I know 3 years was a long wait, but at 17 you've figured out celiac way before many people do. That should make a big impact on minimising its effects and helping you with the diet, so, bizarrely enough, congratulations!  

A lot of good advice has been brought together in this thread: 

Don't worry that your symptoms are bad now. As you follow the diet your body will begin healing itself and you're still very young so hopefully this will go really smoothly. Think in terms of the next 6 months rather than weeks however, recovery will likely take a little time. Eat as healthily as you can, lots of whole foods and try to avoid the gluten free processed substitutes as your digestive system needs all the help it can get at this moment. 

You may want to avoid dairy as well for now and think about reintroducing it later.

This site has been really helpful to me and others. I hope you find it just as useful.

Best of luck!

 

ps, your increased reaction to gluten during the challenge phase was perfectly normal. Many find that reintroducing it much worse than the initial affects and take some time to get over the challenge. That's why you'll see lots of posts here urging folks to 'stay on gluten' till their testing is complete!

 

PPS( :D )  Inasmuch as your post can convey emotion, your's seemed positive :) Stay that way! At times the diet can be a bit isolating and some friends and family may struggle to understand. I'm sure it will be difficult at times making good choices and staying vigilant when everyone around you doesn't have to think twice. Stick with it, your health is paramount and it will be worthwhile. In time your good friends will get it and those that don't aren't worth worrying about. There are great foods you can eat and if not, learn to cook them yourself :P 

Ennis-TX Grand Master

JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately.

I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc.  throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant.  I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • 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
      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
      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
      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
      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
      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.