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

All About Anabelle..(new Here)


grace-inspired

Recommended Posts

grace-inspired Rookie

My daughter is almost 8. She was born premmie and wasn't able to nurse...she reacted strongly to formula and was place on soy(which was still a bit of an issue). She always seemed to react to new foods and constantly had illnesses and diaper rashes as a baby.

Since then--she gets sick all of the time! Strep throat at least once a year--and seems to get a "bug" every few weeks. She also seems to have progressive chemical sensitivities. We can hardly go anywhere w/out her being ill w/ belly ache and headache.

she has always had constipation issues--but over the past few years has gotten really bad. She was finally diagnosed as chronic constipation last year(and bad acid reflux). I imagine she hasn't been "cleaned out" in years. This ould help explain the chemical sensitivities(overload of toxins in the system due to reapsorbtion through bowels) and the immune system overload.

Now--no doctors want to find out WHY she has this horrible issue. They want to give her laxatives for long periods of time and be done w/ you. We eat "healthy". Fruit/veggies, low fat, no "white" carbs except occasional potato stuff. Lots of wheat though...whole wheat, but wheat all the same.

We arrived at the celiac though by my "forever searching" about what could be wrong. (my Dh and Ds have gastro issues too).

I'm reading about all of the stuff that gluten is in and I'm feeling a bit overwhelmed. I'm sure everyone does at first...but geez. She also seems to have dairy issues...so we are planning to "phase out" these two things in the coming weeks. Sounds simple--but those two things are in EVERTHING!

Did anyone else that these things as symptoms--I know many people have diarreah instead...

I am concerned about fiber in the diet, as a lot of the gluten free recipes seem to lack that. What do you asll use to get fiber in your kids diets?

Blessings,

Christina


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Christina:

Welcome to the board and my I say that Anabelle is a lovely name.

I had constipation issues before my Celiac was triggered and I believe it is common among us.

If you intend for Annabelle to go gluten free and dairy free, you have just hit a gold mine of information that can be found no other than here.

We have a lot of extremely knowledge people from all over the world.

To begin your search...Search here under Members and find "nini", and click on her beginners list. She has compiles many files that are invaluable to beginners. When you begin this diet, it is also important to check her lotions, glosses/lipstick (8yrs), shampoo and toothpaste, in that anything that can get into here mouth can be ingested.

It rather overwhelming in the beginning, with lots to learn, but it is very much doable. We are here to answer any question you make have.

Read as much as you can from past post and please stay in touch.

Lisa

Guest nini

you don't have to search for me, I'm here...

simply click on the link in my signature below for my web page, scroll to the bottom of that and you will find the link for the "newbie survival kit"...

happygirl Collaborator

Christina,

Welcome to the board! We are happy to have you here!

Just so you know, if you want an "official" diagnosis from an MD, in order for the blood tests (which is the first step) to be as accurate as possible, your daughter would still need to be eating gluten. I am not advocating for/against having an official dx, but its one of those important bits of information that I felt I should share. If you decide not to get testing, that's fine-you obviously know that you don't need a doctor's note to tell you to go gluten free. However, if you do decide to get tested, print out this list of tests needed (Open Original Shared Link - its the first FAQ on the page) and bring it to your doctor. Many doctors do not order the full panel. Again, having negative tests doesn't mean that she is 'not' a Celiac. Also, the blood tests only check for Celiac, and doesn't detect non-Celiac gluten intolerance. But, if you are having your daughter tested, and your husband and son have issues....I'd go for them all at the same time!

Those are all things I wish I had known when I started this journey, because my doctor knew nothing about Celiac and gave me vast amounts of incorrect info and didn't do all the right tests under the right conditions.

Celiac is often referred to as a medical chameleon. It can present itself in various ways, with contradictory symptoms (i.e., constipation vs. diarrhea, weight loss vs. weight gain, no symptoms at all vs. completely debilitating symptoms). They 'now' believe that "classic" Celiacs (diarrhea etc) actually are in the MINORITY. Celiac can affect just about anything and everything. Often, the effects aren't seen until the person really gets better and they realize many of their other ailments are gone.

Also, many Celiacs are "temporarily" lactose intolerant. The enzyme, lactase, that breaks down the lactose, is essentially located on the tips of the villi in the intestine. Celiacs, when they consume gluten, have damaged villi, which affects the lactase production. For some, once their villi have healed, they are no longer lactose intolerant. Or, some people are lactose intolerant - not related to Celiac. Others are casein (the actual dairy protein, different than lactose) intolerant and there is not a pill for this one, like there is for lactose intolerance.

Tinkyada (rice based, instead of wheat) pasta is by far the best pasta out there! We eat it all the time and serve it to non-Celiacs. Many regular grocery stores carry it, or health food stores, or you can order it online.

Let us know what else we can do to help!!!! Feel free to ask any and all questions!

Laura

grace-inspired Rookie

Thanks! I'm having my dh print that off at work--it wouldn't do it at home for soem reason. We are "transitioning right now. I was at whole foods to buy some flours etc--wow! I got almost nothing for 40 dollars! Does anyone here buy the whole grains and grind them at home to save money? I noticed that the cost of the whole grain was about half the cost of the flour already bagged....

Anyone get rice/quinoa etc from the bulk section of the grocery? I was wondering how careful they are about cross contamination....

Jestgar Rising Star

I buy from the bulk section. My store has all the non-gluten stuff on top and the gluten stuff down low so I don't worry about fallout. Sometimes I wonder about some dufus using the wrong scoop, but I haven't had a problem yet.

rez Apprentice

My 2 cents is get the blood test before you go gluten free. Then, if it's positive, you have a definite answer. If it's negative, you can always do the diet to rule out the test being false negative.


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



Celiac.com Sponsor (A8-M):



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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.