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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.