Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Is My Daughter "gluten Intolerant" Enough To Require Diet?


SoMuchPaint

Recommended Posts

SoMuchPaint Newbie

Recently my kindergarten daughter and I were tested with Enterolab. I am unsure if she needs to be on a STRICT gluten-free diet, or if the occasional cupcake at school or slice of delivery pizza at a party are not really worth the fuss. I think I know the answer already, but am meeting with confusion among the other adults in our family as to how "controlling" I will need to be of her diet, and how much of it can be left to her own paying attention to how she feels, especially as she does not have the most common Celiac genes.

Here are her results:

Fecal Anti-gliadin IgA: 69 Units

Fecal Anti-tissue Transglutaminase IgA: 24 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 6 Units

HLA-DQB1 Molecular analysis, Allele 1: 0303

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,5)

Thank you so much for any insight you can give!


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



Celiac.com Sponsor (A8-M):



SoMuchPaint Newbie

Did I post my question in the wrong place?

sunnybabi1986 Contributor

Hi!

If your daughter's testing showed 10 units or more of Fecal Anti-gliadin IgA or Fecal Anti-tissue Transglutaminase IgA, then your daughter is having a reaction to gluten and does need to be on a strict gluten free diet. Even occasional or small amounts of gluten will create a reaction in her body. If she came back with 69 and 24 units, she is definitely gluten sensitive. No question about it. She needs to be gluten free. 100% gluten free. If she has an occasional cupcake or piece of pizza, her body will have to begin the healing process all over again.

My scores were exactly 10 units and I decided to go gluten free, even though 10 units is on the low end scale of gluten sensitivity. I have been gluten free for 5 weeks now and have seen dramatic results in my digestion and overall health. I'm not 100% better yet, that can take months to achieve based on how much damage is in the intestines.

By the way, there are several yummy gluten free cake mixes out there, and you can make her some cupcakes out of them when there is a party at school. Betty Crocker has come out with a good gluten free yellow and devil's food cake mix.

Hope this helps! Good luck!

Janie

SoMuchPaint Newbie
Hi!

If your daughter's testing showed 10 units or more of Fecal Anti-gliadin IgA or Fecal Anti-tissue Transglutaminase IgA, then your daughter is having a reaction to gluten and does need to be on a strict gluten free diet. Even occasional or small amounts of gluten will create a reaction in her body. If she came back with 69 and 24 units, she is definitely gluten sensitive. No question about it. She needs to be gluten free. 100% gluten free. If she has an occasional cupcake or piece of pizza, her body will have to begin the healing process all over again.

My scores were exactly 10 units and I decided to go gluten free, even though 10 units is on the low end scale of gluten sensitivity. I have been gluten free for 5 weeks now and have seen dramatic results in my digestion and overall health. I'm not 100% better yet, that can take months to achieve based on how much damage is in the intestines.

By the way, there are several yummy gluten free cake mixes out there, and you can make her some cupcakes out of them when there is a party at school. Betty Crocker has come out with a good gluten free yellow and devil's food cake mix.

Hope this helps! Good luck!

Janie

Thank you so much. I wasn't sure just HOW bad the 69 and 24 units are (beyond being a positive test result), but I was thinking that ANY level of autoimmune activity was bad enough to be taken seriously.

Does producing antibodies to gluten mean you technically have an allergy to gluten?

mushroom Proficient
Does producing antibodies to gluten mean you technically have an allergy to gluten?

No, this is an autoimmune response. There is a difference between that and an allergy (an IgE response).

sunnybabi1986 Contributor
Thank you so much. I wasn't sure just HOW bad the 69 and 24 units are (beyond being a positive test result), but I was thinking that ANY level of autoimmune activity was bad enough to be taken seriously.

Does producing antibodies to gluten mean you technically have an allergy to gluten?

I'm not an expert yet on this, but mushroom explained it's an autoimmune response, which in my understanding, is more complex than an allergy. I still have to figure all this out myself, but that's my understanding.

According to Enterolab's site, the number of units of IgA you have really doesn't tell you anything about the severity of what's going on inside your intestines. Some people with lower numbers are sicker than those with higher numbers. Another user on these forums told me that she came back with low units of IgA from Enterolab, but had confirmed intestinal damage with an endoscopy.

Does your daughter have any symptoms? If she does, it would be a good way to explain to relatives that the only way that she will get and stay better is to steer clear of gluten strictly. She doesn't have Celiac, as she doesn't carry the genes, but a gluten sensitivity can make you pretty sick and unhealthy if not treated. Let us know how things go!

Janie

SoMuchPaint Newbie
Does your daughter have any symptoms? If she does, it would be a good way to explain to relatives that the only way that she will get and stay better is to steer clear of gluten strictly. She doesn't have Celiac, as she doesn't carry the genes, but a gluten sensitivity can make you pretty sick and unhealthy if not treated. Let us know how things go!

Janie

My daughter isn't much of a complainer, but if you ask her how she is feeling, she will often mention that her stomach hurts, as do the joints in her hands and her knees. The joints in her middle fingers actually lock up -- if she closes her hand slowly, the middle finger seems stuck straight and then jumps into a bent position with a quiet click sound. She has had dark bags under her eyes for more than two years.

We looked back at family photos, and the darkness first shows in family photos taken a few months after my grandmother's death. She was really close to my grandmother, who was legally blind and lived with us, and her death, from a fall down the stairs while on vacation with us, was sudden and traumatic. I wonder if that event was a trigger. I seem to remember her being a very healthy baby and toddler, but she had cyclic fevers in preschool (never diagnosed; she started preschool a month after my grandmother's death), and seems to catch everything in Kindergarten this year.

I have Hashimoto's thyroiditis (diagnosed when she was 12 months old, probably related to pregnancy) and what was probably rheumatoid arthritis (which started from a badly placed IV line when in labor with my second child), which I treated by eliminating corn and corn products from my diet and undergoing acupressure treatments for about a year. It was really bad, to the point that I was dropping anything I tried to pick up with my right hand, was starting to have trouble using my left hand as well, and was developing stiffness and pain in my left knee. Now my knees are perfectly fine, my hands are mostly pain free, and I get noticeable stiffness and pain in my hands after consuming corn products, like frosting, which is made of powdered sugar (has corn starch). This was before I recently went gluten free myself.

I sincerely hope that a gluten-free diet (which she seems to be readily accepting, perhaps because we are doing it together) will make her asymptomatic, but the stiffness in her hands is making me look suspiciously at corn for her as well. I'd hate to further limit her diet, though, without some sort of proof.

Enterolab doesn't seem to test for corn sensitivity. Does anyone?


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,474
    • Most Online (within 30 mins)
      7,748

    Paula ross
    Newest Member
    Paula ross
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mmar
      Hello! I have been on a strict gluten-free diet for 20 years after my initial diagnosis, but in July had an endoscopy that showed villous atrophy (but multiple ttgs have all been normal). I have gone through everything in my house to eliminate any gluten and have been eating almost no processed foods, and will be getting a second endoscopy in a month because my GI doctor thinks it could be refractory celiac. She told me that if it’s refractory, I would need to see a “specialist” because she doesn’t know enough.  I live in Philadelphia and the Celiac Center at Jefferson has 0 appointments with any doctors, I keep trying. Does anyone know of either a doctor in Philadelphia that treats refractory celiac or a doctor elsewhere that does virtual appointments to treat refractory? Thank you!
    • knitty kitty
      @GardeningForHealth, On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods.  It's very restrictive, but it really helps improve gut health.  It's worth the effort for a few weeks or months. Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf Tea contains TANNINS which can inactivate Thiamin resulting in Thiamin deficiency.  Tannins inhibit the absorption of other vitamins and minerals, especially iron. Tannins can inactivate digestive enzymes.  So drink tea between meals.  Choose a tea with lower levels of tannin, like green tea or Oolong tea.  Oolong tea contains amino acid Theanine which reduces inflammation in the digestive tract. Dairy; Rice, any brand, even after washing 3 times Many people develop Lactose intolerance because damaged villi in the intestinal lining of the digestive tract cannot produce the enzyme Lactase needed to digest the sugar in dairy, Lactose.   Many people with Celiac Disease react to the protein Casein the same as they react to the protein Gluten.  This is because both Casein and Gluten, as well as the protein in rice, carry a similar segment of a protein building block chain (33 mer peptide) that triggers the autoimmune response in Celiac Disease.  Basmati rice is less likely to carry this protein chain and may be better tolerated.  Don't wash rice before cooking.  The added vitamins get washed away.  Some of those grains of rice are extruded vitamins.  They dissolved into the cooking water and are reabsorbed into the grains as the rice cooks. Organic catchup, Potatoes; Tomatoes are a member of the Nightshade vegetables which have been shown to increase gastrointestinal permeability and "leaky gut syndrome."  Potatoes, Peppers and Eggplant also belong to the Nightshades, and should be avoided until healed.  Catsup usually is acidic which can be irritating to the digestive system. Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour Often these contain cross contamination with gluten.  @Scott Adams recently posted a new article about this.  Gluten free products are not enriched with vitamins and minerals needed to digest and process them.  They are high in insoluble fiber and saturated fats.  These may also contain microbial transglutaminase, see below. Sausage, Any processed meat These foods contain microbial transglutaminase, a flavor and texture enhancer, called "meat glue" in the food processing industry, which triggers and provokes anti-gluten antibodies to attack the microbial transglutaminase as well as the tissue transglutaminase produced by our own bodies as with Celiac Disease.  We have articles about microbial transglutaminase, too.  Cassava also contains Thiaminase, an enzyme which destroys Thiamin. Cucumbers from a grocery store, but not from my garden, Most apples, Zucchini, Plums Cucumbers, like these other fruits and veggies, contain lots of soluble fiber, pectin, which intestinal bacteria can ferment and then make short chain fatty acids, which are beneficial.  So that's a good thing.  However, commercially produced breeds of veggies and fruits may contain higher levels of pectins than historically home grown varieties.  Excess consumption of pectins can result in gas, bloating and diarrhea.   Bottled spices  There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms. Gluten-free dairy-free ice cream These can cause reactions if one reacts to oats.  Products made from nuts or nut milks may contain high levels of lectins which are hard to digest and can cause all the usual symptoms.   Smoke from a fire; Strong cleaning chemical fumes These contain Sulfites.  Developing a hyperensitivity to Sulfites is possible in Celiac Disease.  We can be low in vitamins and minerals needed to process Sulfites.  I have Hypersensitivity Type Four where the immune system identifies Sulfites as something to be attacked.  Celiac Disease is another Hypersensitivity Type Four disorder. Packaged sweet potato chips; Packaged plantain chips;  Rice; Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour; Gluten-free dairy-free ice cream A High Carbohydrate diet can lead to Small Intestinal Bacterial Overgrowth (SIBO).  Adopting a Paleo diet like the AIP diet is a great way to change your gut biome without using antibiotics which kill off the bad with the good bacteria.  Taking probiotics may not be very effective as long as SIBO bacteria are entrenched in the digestive tract.  You change what you eat and you change what grows inside you.  You starve out the bad SIBO bacteria, repopulate and feed the good ones.  Supplementing with Benfotiamin helps because thiamine has antibacterial properties that keeps the bad bacteria in check and benefits the good bacteria.  Benfotiamin is needed to process all those carbs turning them into energy instead of them turning to fat.   I hope this has been helpful.
    • trents
      Welcome to the forum @Newhere19! Yes, we have had many forum members that for one reason or another cannot go forward with the confirmation step of the endoscopy with biopsy. Usually it is because they have already been gluten free for a significant period and react so severely to gluten ingestion that they cannot undertake the gluten challenge without endangering their health. But we also have had more than a few who have severe anxiety surrounding the endoscopy itself and cannot bring themselves to go forward with it. May I ask, what was your antibody score or scores, what was the name of the test or tests done and what were the ranges given for normal/negative vs. positive?  What symptoms do you have? What caused you to seek out celiac testing? And to answer your question, many on this forum have had to go forward with the gluten free diet without an official diagnosis for the reasons already stated. You should start seeing symptom improvement within weeks. But realize that achieving a truly free gluten lifestyle is more challenging than most of us realize at the outset. There is a real learning curve involved in order to achieve consistency. That is partly due to the many unexpected places gluten is tucked away in the food supply/supplements/medications and partly because of CC (Cross Contamination) issues. I will offer this primer to get you off to a good start:  
    • Newhere19
      I recently had bloodwork done with a GI specialist and was told that I have celiac.. .but they will not confirm the diagnosis without an endoscopy and biopsy. Due to severe trauma I cannot endure the endoscopy and they made it quite clear full sedation is not an option. So now I have to venture forward assuming this is in fact what is causing all of my symptoms. Has anyone else here had the same experience and started the gluten free diet to see if you're really suffering from celiac? If so, how long did you commit before safely saying the results are accurate? My thought was at least three months would be necessary. Much love to everyone ❤️ 
    • trents
×
×
  • Create New...