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

To Test Or Not To Test

curiousmomma

Recommended Posts

curiousmomma Newbie
curiousmomma
Posted

hi all. I am new to posting to the boards but I have been lurking for a while now. seems you guys are one of the best resources for finding out what is and is not gluten free.

My almost 5 year old has been gluten free for almost 6 months now. a little of our story...

about a year ago I noticed a lump in her groin area. It concerned me so I took her to the doctor. expecting a hernia. this was thought to be the case. but nothing was definite. I was ok with that for a while but noticed it changed size etc. so I asked for some more testing. She was also having tummy aches constantly, sometimes to the point of tears, and incontinence where there had been none previously. We had an x-ray and fond her to be constipated. so badly that there was food matter in her tummy backed up because it had nowhere to go. a doctor wanted to just put her on miralax and leave it at that. I did that to clear her out but wanted more answers. She had never had bowel troubles like this before and it concerned me. all bloodwork came back ok as far as white counts and such.

after some thought and talking witha friend whose sone is gluten-free due to behavioral issues I decided to try that. it seemed the least invasive way to find out if this was her trouble. since she has been gluten-free she has not had any constipation and no more tummy troubles. It is going on 6 months now.

She still has the lump in her groin which I was hoping would go away. My hope was that it was a lymph node responding to gluten in her system and swelling as a result....grapsing at straws...I know. I will deal with that another way since it has been a year now.

as for the gluten-free though I am wondering about getting her tested or not getting her tested. everything in me thinks it is a bad idea to test her because if it comes back negative then why stay gluten-free even though I really think that has helped. but I also worry that instead of an actual intolerance she actually has celiacs and then worry about any residual damage to her small intestine if she does get gluten accidentally. Plus to be perfectly honest my husband tries but is not always as vigilant as I would like. so if she comes up negative, which I have heard can happen incorrectly, then I worry I will NEVER get him to pay attention.

any thoughts and/or experiences with testing? I appreciate any and all help here...

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

Celiac.com Sponsor (A8-M):


SD77 Newbie
SD77
Posted

It can be a hard decision to make.

Has she had any reactions when/if she accidentally got gluten? To test her, she'll have to go back on gluten for a while, or you can try the genetic test. Also, she's probably not in school right now...you may want a formal diagnosis so the school will work with you.

An indirect approach, is to get yourself and husband tested, and either of you come back positive, then you can decide what to do next.

Good Luck!!

Shannon

chiroptera Apprentice
chiroptera
Posted

You probably know this, but if you choose the traditional route of testing (ped gastro, first a blood panel, then an endoscopy to take a biopsy) they have to be eating gluten. It is very important not to go gluten free first if you chose this route. We did for our twin daughters and the doctors said we would have to put them back on gluten for 6 months, eating the equivalent of 4 slices of bread a day, in order to do the biopsy. So, if you want to do this she will have to go back to eating gluten. In our case we chose not to do that, one because of their improvement and two, because they are nine and will not even look at gluten let alone eat it. One says she feels sick to her stomach just walking down the bread aisle.

Now, you could ask a doctor to run a gene panel because that doesn't matter if someone is eating gluten or not. We did and they had one of the most prominent genes for Celiac (plus their paternal grandma is a Celiac, traditionally diagnosed about 1o years ago). This will not tell you for sure if she has Celiac but can tell you if she won't ever develop it.

Another reason we didn't put them back on gluten is, for us, we are scared of doing the biopsy anyway as for young children they put them under and there are risks, although very small in the procedure itself. Now if one of my children was not better and still sick my thought may change and I may have done it. It is such a personal opinion and realistically the test is very safe and usually well tolerated.

One thing we also did was use stool testing via Enterolab (which will open a can of worms because many people do not agree with Dr. Fine) and they came back gluten, casein and egg intolerant. In our opinion, Enterolab was great to do because there is no risk involved at all and it gave our family a sense of reassurance that we do need to be off gluten. Most insurances do not pay for the testing, but at the time we did it my husband had a job so we could do it. Plus, our med insurance wasn't that great so we had out of pocket costs anyhow. Again, a very personal decision.

I can totally see wanting to feel like you know for sure that your child cannot eat gluten. Everything was going great and we felt all empowered and all; then we had to go out of town and we took all of our own food and drink for four days. That was very hard and I had thoughts of "geez do we really need to be doing this?"

But, then reality hit me because I know what works for my kids (and me too) and that is being gluten free!

Like it or not

hope that helps :)

Benshell Explorer
Benshell
Posted

My 6 year old was diagnosed with celiac via blood test, no outright gastro symptoms, just no weight gain for 6 months. We chose NOT to do the endoscopy also, due to the scaryness of the anesthesia (putting her completely out). The dr felt he would be "very surprised" not to find any damage in the endoscopy, therefore would put her on a gluten free diet. So we just skipped point A to get to point B as we would have gotten there anyway.

It's been a little over 2 weeks that she's been Gluten Free and I've noticed some changes - she doesn't have BM as much (she used to go 3 times a day), now she goes once. Very rarely complains of tummy aches or headaches anymore (used to a lot). It's been a challenge trying foods as she misses her old stuff, but I've been making a lot from scratch and very healthy (good for all of us). My only complaint is the junk food is so loaded with sugar (I guess to make up for the texture/taste) and it makes her hyper. So I limit it to one "sugar" a day (cookie, bars, etc..)

Good luck and know that there are other parents that also decided NOT to do the endoscopy and just go gluten free...as they say - the proof is in the gluten free pudding.

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 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.