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

Interesting Stuf


ChickenFeet

Recommended Posts

ChickenFeet Newbie

Hi.

I am 26 years old with two kids. I have started on this gluten-free odyssey because of my oldest daughter Z. I thought it might benefit her, but did not anticipate it affecting me so positively. We have only been low-gluten (I keep messing up! Like I ate some soy sauce thinking it didn't have much gluten in it and used a seasoning mix that I think must have had gluten in it) for a little over a week now. I guess I will start with Z.

She started showing some autism spectrum stuff when she was 2 1/2. It was really scary for me because it was like she was a whole different child. I read about gluten intolerance on the internet and found that these symptoms were similar. I tried her on a gluten-free diet for a week but then she was diagnosed with a kidney reflux and had to go on a high-fiber, high-wheat diet in order to reduce constipation in the hopes that it would alleviate some of the pressures inside her bladder. There are more details about this in a reply to another person's topic post and I don't feel like writing it all again! Anyway to make a long story short, their diet did not help her at all and if anything made it all worse. Well, apparently she did not grow at all this past year if the measurements they took last year were accurate. Her blood test for celiac antibody was normal a week ago, but I am doing this anyway. She is a lot calmer, less anxious, does not complain that her stomach hurts anymore (before I thought it was because she needed to pee), does not tell me her "bones hurt" (she points to her joints), and does not complain of hunger as much. She is also pooping a few times a day. She has also been showing some signs of OCD (scary thoughts that she tells me about) and I have not heard from her about that in almost a week. She has not told me anything disturbing and seems happier. She does not know the symptoms of celiac or gluten intolerance so this is not placebo on her part. All she knows is that we are not eating things with gluten in them.

I have a two and a half month old daughter H, too. She is breastfed exclusively. She has been vomitting and spitting up excessively since birth. I have been trying to figure out what her problem is by watching my diet. I know cow's dairy, nuts, peanuts and its butter, and possibly eggs make it worse. She is on Zantac but it did not seem to make much difference. I knew there had to be something else that I was eating all the time, something sneaky that was involved too. When I started my daughter gluten-free, I went gluten-free too and H has stopped throwing up for the most part. She is still doing the normal spitting up after eating, but not the projectile, sudden, and unpredictable vomitting a few times a day like before.

I am now wondering if I am celiac and never realized it before. A few days after stopping gluten, I suddenly realized I wasn't thinking about my stomach. I was bloated and a little sore before without ever realizing it. I have been having more frequent bowel movements, have NO HEADACHES!, have a better memory, my OCD has gone down a bit, I have more energy, am actually sleepy at night and sleep better. About 10 months before getting pregnant with my daughter, I gave blood and was badly anemic for 8 months after and the iron pills were not helping. I craved liver so badly that I just cooked a slab of it in an iron skillet and inhaled it. I was to the point of nearly passing out because of it. For whatever reason, I could not recover from the blood loss. Also before I was pregnant I was going to to see a GI doc about some severe, sharp abdominal pain that I was having all the time that made me think something serious was going on. I never considered celiac at the time, but now I wonder. And it occured to me that maybe H is not sensitive or intolerant, but what if she is getting my celiac antibodies and is having a reaction for that reason? She has been virtually throw-up free for two to three days, but I ate a tiny bite of real bread today, and she has been throwing up ever since her feeding afterwards. It was such a tiny bit for it to get into the milk supply and cause a reaction of her own that I cannot help but wonder if I reacted to it and she just got the antibodies from me. That seems to be much more likely than a tiny bit affecting her directly through the gluten entering her body. My stomach is cramping a little now.

I have had OCD since age four and severe migraine since age 11. It was the migraines that caused me to be misdiagnosed with epilepsy by a silly doctor who has been dismissed from her employers. They are complicated in that they mimic stroke and can actually cause stroke. I have not have any migraines threaten since I went gluten-free and have not had the headache I have had all day every day the time for the last several years.

My younger sister has IBS and she is coming to visit in a few weeks and will be eating what we eat. I wonder how this will affect her.

I don't want to get tested now because then I will have to consume wheat in order to get the best possible chance of accurate results and my baby will be sick and throwing up again.

-Kelli


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



Celiac.com Sponsor (A8-M):



jackay Enthusiast

It sounds to me like you have your answer even without testing. All three of you are doing better without gluten. That's wonderful! If you rid your house of gluten, you won't be tempted to eat anything that contains it.

GFinDC Veteran

It doesn't hurt anyone not to eat gluten. So there is no harm in trying it for a few months or more to see what happens. It can only help if there is an issue with it. So I think you are on the right track. The gluten free diet can be a very healthy diet also, if you follow a whole foods diet. A whole foods diet as in eating foods that aren't processed, flavored, colored, preserved, emulsified and stuffed into boxes with colorful labels etc. You would be eliminating all those chemicals from your diet, which is prolly a good thing. You shud wash / rinse your fresh produce though and rice before cooking it.

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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - 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.

    4. - 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.

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @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
      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
      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?
×
×
  • 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.