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

Wwyd? Negative - Of Course


jayhawkmom

Recommended Posts

jayhawkmom Enthusiast

Ok, so the doctor's office just called. Finally, after numerous days of waiting - our baby's tests came back. Of course they are negative. He's been gluten free since October, I knew they would be.

The nurse suggested I no longer restrict him from *anything* other than the foods he has RAST tested positive for - above a class 1. That means no eggs, no peanuts. But, she said that his soy and dairy were so low that we should not be restricting. Well - I know for a FACT he reacts to both dairy and soy.... so I will NOT reintroduce those to him. (in fact, he has terrible diaper rash from eating an EnerG cracker yesterday - SOY!)

Would you, if you were in my position, reintroduce gluten to see if there is a reaction??

I can't even begin to tell you how torn I am about this. If he doesn't HAVE to be gluten free... why force it? However, if his tests were negative (meaning both tTg and EMA were as low as they could be) because he's been gluten free and I reintroduce and he gets sick... I don't think I could live with myself.

What's a mom to do???


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star
The nurse suggested I no longer restrict him from *anything* ....

My guess is that you routinely restrict him from things like coffee, alcohol, deep fried foods, etc. What's one more thing that's probably bad for him?

And wouldn't it be easier to give all the kids the same type of food?

Since these tests appear to be very unreliable in small children why don't you just keep him gluten-free until he's 7 or 8 years old? You can always test him later, and you may find that after a few accidental challenges that he's better off without gluten, or that it doesn't seem to make him very ill (but if this is the case you might want to strongly consider a challenge and blood tests when he's older. There's no point in assuming everything's fine when you consider the rest of your family's reaction to gluten).

As long as you make sure all your kids get a good nutritional balance of food, there's no reason to worry that you are depriving them of anything.

jayhawkmom Enthusiast
My guess is that you routinely restrict him from things like coffee, alcohol, deep fried foods, etc. What's one more thing that's probably bad for him?

Very good point!!! :)

Since these tests appear to be very unreliable in small children why don't you just keep him gluten-free until he's 7 or 8 years old?

As long as you make sure all your kids get a good nutritional balance of food, there's no reason to worry that you are depriving them of anything.

As you can see from my sig - my 8.5 year old son was tested for Celiac at 2 and again at 4 due to a myriad of symptoms. It wasn't until "just now" that he had a positive blood test. It all started with us starting to severely restrict the amount of gluten in the house. So, he wasn't eating it every day. As it went longer and longer between times that he was exposed to it... the reactions would come more and more rapidly. (Typical... isn't it?)

So, I'll just continue to feed my baby boy the same foods that we are eating. And, when he's much older and not relying on me for all his meals, we'll see where we need to go to either prove or disprove Celiac.

Thank you!!!

Jestgar Rising Star

Hang in there. There are a lot of people on the same journey.

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. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

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

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748

    MaggieSc
    Newest Member
    MaggieSc
    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

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.