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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,304
    • Most Online (within 30 mins)
      7,748

    Mary Rise Up
    Newest Member
    Mary Rise Up
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many processed foods are fortified.  Gluten free foods are exempt.   "I’ve been completely asymptomatic since diagnosis."  There are 200 symptoms that can be caused by Celiac Disease and the malabsorbtion it can cause.     • "Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). " Many are misdiagnosed as gall bladder disease.  Choline is needed to create the bile salts needed to digest fat.  90% of our population is deficient.  Eggs and beef are the best source.  The RDA (minimum daily allowance is 500 mg to 3500 mg daily.  One egg has 27% DV.  Broccoli, chopped, boiled, drained, ½ cup only has 7%.  Low choline can cause Non Alcoholic Fatty Liver Disease.   Choline and Risk of Neural Tube Defects in a Folate-fortified Population; Could we be overlooking a potential choline crisis in the United Kingdom?;   Choline was formerly called vitamin B4.  I prefer phoshphatidyl choline for supplementation as it is the form we get in food.   • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds.  Vitamin D deficiency may be linked to chronic back pain, But I took levothyroxine for slightly low FT4 levels.  I supplement Iodine by taking Liquid Iodine.  50 mcg per drop.  The RDA is 150 mcg to 1000 mcg in the US.  In Japan it is 150 mcg to 3000 mcg.  I take 600 mcg a day. Since 1970 the intake of iodine has decreased in the US by 50%.  Hypothyroidism has increased 50%.  Insufficient iodine leads to the thyroid gland working harder to produce these hormones, and if it cannot keep up, hypothyroidism can develop, according to the Mayo Clinic.   Iodine Insufficiency in America: The Neglected Pandemic.   I see improvement in muscle tone, healing, brain fog since taking the Liquid Iodine.  I could not eat enough seaweed. B1 stops the cramps in my feet B6 speeds up gastric empying and works on my freezing toes at night.  250 mg several times a day sometimes.  Also seems to be helping bowel regularity. 5 mg Lithium Orotate helped me with overthinking.   10,000 IU vitamin D to control autoimmune, mental health. 500 mg Thiamine - neurologic symptoms 500 mg Nicotinic Acid - increase capillary blood flow 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.). 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine. Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  600 mcg of Liquid Iodine.  Sometimes twice a day, usually added to a drink.
    • Scott Adams
      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
×
×
  • Create New...