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

Confused, Need Clarification On Test Results

lisa49

Recommended Posts

lisa49 Newbie
lisa49
Posted

When my son was 5, he was diagnosed as sensitive to wheat milk and eggs. He had no symptoms of wheat allergy, just general food allergies. We had to take him off of wheat, milk and eggs. Wheat became difficult, so we added it back to his diet and he didn't seem to have a reaction. We kept it to a minimum, but did not cut it out.

Three years later. He breaks his arm and goes to the hospital where they find an abnormal heart rythm. My husband and I decide to cut wheat to see if it helps, but it becomes too difficult. I decide I need a definite diagnosis in order to justify the diet since I see no benifit and it's so hard. I take him to the naturapath and tell her that I want the antibody test and the genetic test for celiacs.

I just called and got the results of the antibody test and think I'm going to cry.

The woman who read the results was not very clear, but this is what I got.

Gliadin IgA positive over 1.10

Gliadin Igg positive over 1.10

Transgluten positive over 1.10

I haven't gotten the genetic results back. Is this a definite diagnosis? I know I wanted this test, but it still hasn't sunk in what this means. Is it a positive celiacs? My dr. is out until next Tuesday, so I didn't talk with her yet. What if the gene test is negative? Should we all get tested now? Ugh. Help me be ok with this or tell me there's hope and that this test doesn't really mean anything. I'm seriously holding back tears here.

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

Celiac.com Sponsor (A8-M):


Mother of Jibril Enthusiast
Mother of Jibril
Posted

Welcome to the group!

Yes, your son has celiac disease. False negatives are pretty common, but false positives are not. Ttg is very specific for celiac disease. Considering that your son is having problems with his heart, it's very, VERY important that you get him on the gluten-free diet and follow it to a T. This includes not just wheat, but also barley, rye, and oats.

This forum is a great place to get some help :) What have been your problems in the past with the wheat-free diet?

Testing for your whole family would definitely be appropriate. Considering that celiac disease is genetic (although a lot of people go undiagnosed) a gluten-free diet might be the best thing that ever happened to your family. It would make cooking a lot easier if everyone was doing the same kind of diet.

Don't be afraid to ask lots of questions!

climbmtwhitney Apprentice
climbmtwhitney
Posted

Hi Lisa,

Yes, it sounds like your son does have Celiac. Your doctor will probably want to do a biopsy.

I'm so very sorry. It is perfectly o.k. to cry. I sure did. My 10 year old daughter and I were diagnosed Celiac in August. And, my 5 year old son is very gluten intolerant. I cried. Then cried some more. Yes, the diet is very difficult. I tossed everything in my pantry and freezer and started over. After a month or two it got SO much more doable. Then we found out that we were also casein (milk) intolerant too. Then my daughter and I were diagnosed soy intolerant. Now, looking back, removing just gluten seems rather "simple" compared to cooking/eating now. Who knew?

They have great mixes on the market for bread. We love Pamela's Wheat/Gluten Free bread mix. I make 2 loaves at a time and freeze one. Tinkyada makes great pasta in a bizillion shapes. Kinnikinnick has graham crackers that the kids love and a great pizza crust too. Envirokids makes yummy "Gorilla Munch" cereal. The list goes on. Just email me if you want more help getting started. I've mastered a homemade chocolate chip cookie, a sugar cookie and a vanilla cake too. I keep cupcakes in the freezer to send to birthday parties. The kids have a "cookie jar" in their classroom at school to they can have treats when the rest of the class is enjoying a birthday treat.

Is it more work? Absolutely. Is it difficult to dine out? Absolutely. Is it life changing? It was for us. But, you know what? It is SO VERY worth it to see my children thriving. So worth it.

So, have a good cry or two or three. Then, get started. It will get easier. If you are very positive and upbeat about it, then it will be so much easier for your little one to be as well. Good luck. You can do it!

Jill

lisa49 Newbie
lisa49
Posted
  • Author

Thanks for responding. It took me forever to find this thread again! I've had 3 years of practice with gluten-free replacements and have gotten pretty good at baking and cooking. My problems are when we're out and about. Spices? Knowing the small minute, important details. We've avoided wheat for periods of time with success, but never paid attention to the details of true wheat-free living. The details are overwhelming.

Also, my son seems sicker on the wheat-free diet. I'm sure it's because we've never done it correctly. He is just so picky. He loses weight (he's skinny to begin with) and refuses to eat anything. When he does eat , he gets gassy and has stomache aches.

We're all going to go completely gluten-free and will raid the pantry/spice cabinet tomorrow. I'm just so sad about it. I'm not a very disciplined person, but I have to become a master of this way of life for my son's sake.

Luckily, I have a favorite bread recipe!

Does anyone know how to go about finding a good nutritionist? How do you even go about using a nutritionist?

lisa49 Newbie
lisa49
Posted
  • Author
Hi Lisa,

Yes, it sounds like your son does have Celiac. Your doctor will probably want to do a biopsy.

I'm so very sorry. It is perfectly o.k. to cry. I sure did. My 10 year old daughter and I were diagnosed Celiac in August. And, my 5 year old son is very gluten intolerant. I cried. Then cried some more. Yes, the diet is very difficult. I tossed everything in my pantry and freezer and started over. After a month or two it got SO much more doable. Then we found out that we were also casein (milk) intolerant too. Then my daughter and I were diagnosed soy intolerant. Now, looking back, removing just gluten seems rather "simple" compared to cooking/eating now. Who knew?

They have great mixes on the market for bread. We love Pamela's Wheat/Gluten Free bread mix. I make 2 loaves at a time and freeze one. Tinkyada makes great pasta in a bizillion shapes. Kinnikinnick has graham crackers that the kids love and a great pizza crust too. Envirokids makes yummy "Gorilla Munch" cereal. The list goes on. Just email me if you want more help getting started. I've mastered a homemade chocolate chip cookie, a sugar cookie and a vanilla cake too. I keep cupcakes in the freezer to send to birthday parties. The kids have a "cookie jar" in their classroom at school to they can have treats when the rest of the class is enjoying a birthday treat.

Is it more work? Absolutely. Is it difficult to dine out? Absolutely. Is it life changing? It was for us. But, you know what? It is SO VERY worth it to see my children thriving. So worth it.

So, have a good cry or two or three. Then, get started. It will get easier. If you are very positive and upbeat about it, then it will be so much easier for your little one to be as well. Good luck. You can do it!

Jill

I would love a good vanilla cake recipe!

climbmtwhitney Apprentice
climbmtwhitney
Posted
I would love a good vanilla cake recipe!

Here goes, Lisa......

Vanilla Cake - GFCFSF

1 bag Pamela's Classic Vanilla Cake Mix

4 eggs

1 box jello instant vanilla pudding

1/4 c. canola oil

3/4 c. water

Mix all ingredients about 1 minute. Pour into a greased pan and bake* 325 for:

1 9" pan, 35 - 42 min

2 8" pans, 25 - 30 min

1 9 x 13 pan, 28 - 32 min

cupcake pan (3/4 full), 20 - 26 min

*Baking times approx.

Double recipe for 2 9" layers and you'll have a bit extra for a few cupcakes.

We love this cake! :) Awesome flavor. Not at all gritty. A tad dense. Delicious! No need to worry--"Regular" eaters can't tell it's gluten-free.

We usually frost it with a blended mixture of 1/2 Pamela's Vanilla frosting mix and 1/2 Pillsbury Creamy Supreme Vanilla frosting. There is minor soy (lecithin and soybean oil) in the Pillsbury frosting. Too much for me, but o.k. for my daughter. This frosting works best for the 9 x 13 variety or cupcakes. It droops a bit too much to frost a layer cake--except for the top. Yum.

Jill

ravenwoodglass Mentor
ravenwoodglass
Posted
Also, my son seems sicker on the wheat-free diet. I'm sure it's because we've never done it correctly. He is just so picky. He loses weight (he's skinny to begin with) and refuses to eat anything. When he does eat , he gets gassy and has stomache aches.

We're all going to go completely gluten-free and will raid the pantry/spice cabinet tomorrow.

The reason he most likely was sicker was because the diet was wheat free and not gluten free. You eliminated enough gluten to make him more reactive to the smaller amounts he was getting. Once the home is gluten free and you get proficient in finding hidden gluten you will find he improves.

You have found a great place to learn the ins and outs of the gluten free lifestyle. Now is the time to test other family members before they are gluten free. Once they are gluten-free they willl show negative on the tests.

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.

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 Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil He suggested he take Black Cumin Seed Oil for inflammation. He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation." I don't think black seed oil is...
    2. knitty kitty
      - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      Healthy Omega Three fats. Olive oil or flaxseed oil, oily fish, fatty cuts of meat. Our bodies run much better on burning fats as fuel. Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body. Unfortunately, thiamine mononitrate is used to enrich rice. Thiamine mononitrate is relatively unusable...
    3. Scott Adams
      - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

      The reaction one gets when they get glutened varies a lot from person to person. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
    4. Theresa2407
      - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

      A gluten ingestion can last for many months. Many years ago there was a celiac conference in Fl. Everyone there got contaminated with some having difficulty 6 months to recover. It will hit your Lympatic system and spread through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn...
    5. Hmart
      - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

      Thank you so much for the responses. Every piece of information helps. I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday. I haven’t had either breath test. I did ask about additional testi...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,940
    • Most Online (within 30 mins)
      7,748
    Joyce B
    Newest Member
    Joyce B
    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
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By knitty kitty · Posted

      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • 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.