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

Home Tests


KahleFamily

Recommended Posts

KahleFamily Apprentice

I have completely taken gluten, dairy, eggs and soy out of my diet after a "You may have Celiac Disease" diagnosis. Let me tell you, I feel MUCH better since then. Most of my problems have all but completely vanished.

The problem is that my husband doesn't have gluten problems, and my kids are not diagnosed with having them either. My husband LOVES premade, easy to do type cooking, (You know the kind that is terrible for anyone ESPECIALLY gluten intollerant people) and my kids show signs of Celiac Disease, especialy my son who is tiny for his age and gets tummy aches and even heartburn (he is 5). My daughter has a constant rash which causes her doctor to just shrug and say "I don't know what it is, put some diaper rash cream on it" and she shows signs of celiac as well. I can't convince my husband that it is better to spend the extra time and money to completely redo my family's diet. I believe the only way to do so is to test my children.

Also, after speaking to my son's school, it sounds like they will not accommodate a gluten-free diet unless the child is confirmed to have an intollerance. Otherwise they just think of it as a personal preference, the parents wanting their kids to be treated special.

Are there any at home tests that are credible? I have heard of a few different ones, like enterolab. Is it worth looking into?


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



Celiac.com Sponsor (A8-M):



iamgf Newbie
I have completely taken gluten, dairy, eggs and soy out of my diet after a "You may have Celiac Disease" diagnosis. Let me tell you, I feel MUCH better since then. Most of my problems have all but completely vanished.

The problem is that my husband doesn't have gluten problems, and my kids are not diagnosed with having them either. My husband LOVES premade, easy to do type cooking, (You know the kind that is terrible for anyone ESPECIALLY gluten intollerant people) and my kids show signs of Celiac Disease, especialy my son who is tiny for his age and gets tummy aches and even heartburn (he is 5). My daughter has a constant rash which causes her doctor to just shrug and say "I don't know what it is, put some diaper rash cream on it" and she shows signs of celiac as well. I can't convince my husband that it is better to spend the extra time and money to completely redo my family's diet. I believe the only way to do so is to test my children.

Also, after speaking to my son's school, it sounds like they will not accommodate a gluten-free diet unless the child is confirmed to have an intollerance. Otherwise they just think of it as a personal preference, the parents wanting their kids to be treated special.

Are there any at home tests that are credible? I have heard of a few different ones, like enterolab. Is it worth looking into?

As far as Enterolab is concerned ... my older sister was considering the Enterolab testing for her three girls (because Celiac blood tests can produce false negatives) and after a tiny bit of research and talking with families who have used Enterolab, she believes it to be more accurate than blood testing. However, due to cost she did not do the Enterolab testing. That is the extent of the information I can provide on Enterolab.

You should know that your husbands resistance is not uncommon. Even the traditional, medically accepted method of Celiac diagnosis (blood testing and endoscopy for intestinal biopsy) might not be the driving force for his acceptance to change that you are hoping for. It is, after all, a life-long dedication to living gluten-free, and regardless of how you manage it at home it will affect him when you eat out and travel. This is not to say I support or agree with his position, just that I understand where it comes from, have dealt with this issue myself (with various loved ones) and believe it seldom comes from a lack of love.

Out of curiosity ...

1) Have you been tested for Open Original Shared Link or did you work with your Doctor on following an Open Original Shared Link?

2) Is your pediatrician unwilling to test the kids for Celiac, or are you hoping to avoid doing blood draws on the kids?

3) Who does most of the cooking at home?

KahleFamily Apprentice
As far as Enterolab is concerned ... my older sister was considering the Enterolab testing for her three girls (because Celiac blood tests can produce false negatives) and after a tiny bit of research and talking with families who have used Enterolab, she believes it to be more accurate than blood testing. However, due to cost she did not do the Enterolab testing. That is the extent of the information I can provide on Enterolab.

You should know that your husbands resistance is not uncommon. Even the traditional, medically accepted method of Celiac diagnosis (blood testing and endoscopy for intestinal biopsy) might not be the driving force for his acceptance to change that you are hoping for. It is, after all, a life-long dedication to living gluten-free, and regardless of how you manage it at home it will affect him when you eat out and travel. This is not to say I support or agree with his position, just that I understand where it comes from, have dealt with this issue myself (with various loved ones) and believe it seldom comes from a lack of love.

Out of curiosity ...

1) Have you been tested for Open Original Shared Link or did you work with your Doctor on following an Open Original Shared Link?

2) Is your pediatrician unwilling to test the kids for Celiac, or are you hoping to avoid doing blood draws on the kids?

3) Who does most of the cooking at home?

I have not been tested for Celiac Disease, for many reasons. I am the only one currently working, and I do not have insurance. I had already been tested for lots of other "more immediate" things (thindgs that could hospitalize me). I wa spending so much money on myself, I couldn't bare it anymore. My doctor suggested it may be Celiac Disease, and told me to try the elimination diet.

My kids have been through many doctors, I have not found one willing to test the thory that my kids may haveany gluten intollerance (one, however called social services on me because my son is small).

I cook a big dinner every night when I get home which usually gets served for lunch the next day. My husband was laid off, so he does the breakfast and lunch.

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 Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    2. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    4. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748

    DottieLyn
    Newest Member
    DottieLyn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.