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

inver

Recommended Posts

inver Apprentice

My daughter (age 12) was diagnosed 5 years ago as a celiac.  Five years on a gluten free diet and she continues to have reactions, severe stomach aches, constipation.  The past few months have been really bad.  Eliminating dairy and a lot of processed gluten-free foods have helped a lot.  Sticking to whole foods helps.  However, she is still reacting to something .  Our house is gluten-free so not cross contamination.  Has anyone tried food sensitivity testing, like the ALCAT test?  Was it helpful?  Do you feel you got accurate results?   Did insurance pay for it?  Who prescribed the test? We're going crazy with the elimination diet, it is just too hard...also I feel that she eats some foods and doesn't react for a few days.  Impossible to figure out!  She has had all conventional testing and allergy testing....everything negative.

Thank you!!!


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



Celiac.com Sponsor (A8-M):



Lucas Newbie

Hi!

I used to have the same problem as well. I would recommend a simple blood test that can be done by an allergist. This will show if your daughter has a true allergy to other foods. If she just has an intolerance, it may not appear. I have allergies to gluten, corn, soy, peanuts, and shellfish. Going gluten free did not fix my issues, which is why I needed the blood test. If you do not want to get the blood test, I would recommend cutting these foods out of your daughter's diet. I will say it is very hard at first, but it is definitely worth a shot. Corn is not a "top allergen" in the U.S. so it does not need to be listen on labels under "Contains". Soy and peanuts will be listed however. 

I hope this helps! It worked for me and I went from having years of stomach issues to finally feeling like a normal human being. I wanted to share my story in hopes that it helps your daughter.

tessa25 Rising Star

Has she had a repeat of the blood testing for celiac? Have the numbers gone down? If she hasn't had a repeat blood test perhaps she should so that you could see if she still getting gluten. If her blood tests are normal perhaps her doctors could check her for other issues. If her blood tests are high then she could be getting gluten from somewhere like school or at her friends house

Ennis-TX Grand Master

 

Try the blood test for the gluten antibodies as mentioned above first to make sure there is no gluten sneaking in.

Might try extending the elimination diet trial runs by a few days. ALSO random thought, I personally sometimes get a flare up from eating a food that did not bother me for days and it bothers my UC just randomly. And I have to remove it and any kind of spice for a few days then I am fine eating them again once it calms down and the inflammation goes down. Along this line she might be reacting at seemingly random to a spice or ingredient just at certain times. If she has damaged intestines it is not uncommon to react to spice, or certain high histamine or acidic foods at first, Hate to say it but try a more bland and very very simple diet of nut butters, seed butters, egg, steamed veggies simple unprocessed meats (not grilled but baked or steamed) for a few weeks cooking them really soft by using microwave, steamer, baking dish. to prevent making them hard and avoid any spices or condiments. Also avoid stuff that can irritate the gut like onions, garlic, tomatoes peppers, fruits. I find doing this sort of "resets" me faster.

inver Apprentice

Yes she has had repeat blood work and everything was normal.  I've gone to top doctors in the area (NYC). She's been tested for everything all negative.  Wondering if another food sensitivity.  Ennis-- I'm going to try this-- put her on a bland diet for a few days.  Everyone is great! Thank you!

 

 

 

 

inver Apprentice

Lucas, had no idea that corn does not have to be listed.  Hard to believe right? Thanks for the info!!! 

Ennis-TX Grand Master
4 minutes ago, inver said:

Lucas, had no idea that corn does not have to be listed.  Hard to believe right? Thanks for the info!!! 

I also have a high allergy to corn....it is in everything and everywhere. Really makes life tough as it is undeclared ingredient in some proprietary blends, spices, etc. Also used under many many other names, from fiber, matodextrin, vegetable fiber, and some that make no sense at all.


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



Celiac.com Sponsor (A8-M):



RollingAlong Explorer

You might also consider histamine.  That can aggravate things and it is tricky to test for.  However, eating "anti-histaminically" is fairly easy and healthy.    My spouse solved a lot of mysterious reactions when he started trying to take histamine into account.  

We found this website to be very helpful.  Open Original Shared Link

Histamine  could be an additional variable to your hunt - good luck! 

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.