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knitty kitty

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  1. There are three hundred symptoms of Celiac Disease. Everyone has different combinations and severities.

    I have found that the older I get the worse my reaction is, especially if I have been gluten free for a while. My arthritis is awful when glutened. I, too, have peeling gums when exposed. After my last dental appointment, I developed an ulcer where the topical anesthetic was rubbed and the numbing shot was given. The anesthesia was anticholinergic.

    The depression that comes after being glutened is terrible. Gluten binds to the receptors in the brain where those feel good chemicals (dopamine, serotonin) are supposed to go and are hard to remove. B vitamins help displace the gluten molecules. B vitamins are absorbed in the small intestine, where damage from Celiac Disease occurs. So, I take vitamin supplements.

    I recommend following the autoimmune paleo diet and the low histamine diet for several weeks. Just meat and vegetables, but no nightshade vegetables (peppers, tomatoes, eggplants, potatoes) because they are anticholinergic, too. Everyone is different. This is what works for me. It does take several weeks to feel better, just be kind and patient with yourself, ride it out and it will get better.


  2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

    Hope this link helps.

    Your history sounds similar to mine. I got much worse when I started taking antidepressants.

    Many medications commonly prescribed are anticholinergic. Things like antidepressants, antihypertensives, sleeping aids, antihyperglycemics,and antihistamines and antacids are anticholinergic. The more a person takes, the higher the anticholinergic load. Having a high load increases the chance of developing dementia.

    Some people who have Celiac disease don't have enough of an enzyme to break down these medications, so there is a toxic build up. The saying for the symptoms of the toxicity is red as a beet, dry as a bone (skin rashes), hot as a hare, bloated as a toad, blind as a bat(vision changes), and my favorite, mad as a hatter.

    My anticholinergic load was eleven (on a scale of one to ten) and I was undiagnosed Celiac at the time, so I was a hot mess. It was very scary and I never want anyone else to go through that.

    Make sure your medications do not have gluten in them, too.


  3. Ask your doctor if you could be having an anticholinergic reaction to your antidepressant.

    Celiac disease messes up the metabolism and the drug doesn't get cleared out of the body properly. The build up has horrible effects.

    When it happened to me, it started with terrible diarrhea and increasing anxiety. The dose was increased and everything got worse. I can't even write how horrible it was.

    Symptoms are hot as a hare, dry as a bone, red as a beet, bloated as a toad, blind as a bat, and mad as a hatter. Not fun at all.

    Hope you can just cut out dairy and feel better.


  4. Could you be experiencing low blood sugar? Your symptoms seem similar to the ones I experience when I get low. I'm diabetic so I have to be aware of the amount of carbs consumed. I get very anxious and have muscle twitches when my blood sugar drops. Try a spoonful of honey when you feel anxious or twitchy. If it is low blood sugar, you should feel better within twenty minutes.


  5. Hi, Icelandgirl. You asked about what happens when my cup runs over. If I get more histamine in my cup than my body can cope with, I get allergy symptoms. Everything swells up like a sponge, sinuses, ears, intestines, skin. If my cup runs over because of a high histamine food, I know it will resolve within a few hours or days. But if gluten is the allergen, the reaction is a million times worse and takes much longer to resolve. Gluten brings its own bag of tricks to the party, arthritis, migraines, neuropathy, brain fog, etc.

    Yes, I'm glad that on the low histamine diet we can have chocolate, avocados and nuts. I have trouble keeping weight on, too. I felt better when I went gluten free, but my body sighed a sigh of relief when I started the low histamine diet. Lol :)


  6. I understand. My ears will feel full and squishy if I start having a reaction, too. Things bloom here all year round, so it can be trying. But I have found that on the low histamine diet, I don't have as severe a reaction.

    The analogy of a cup running over when having a reaction is a good one. The lower I can keep the histamine in my cup, when I do have a reaction, maybe my cup won't become full and spill over causing a horrible reaction.

    I try to avoid antihistamines if at all possible. I had an allergic reaction last year that was really terrifying. The medications I was given to make me better caused a different type of reaction that was worse. It was an anticholinergic reaction. I thought I was losing my mind. Never want to go through anything as scary as that again, so i buckled down to do the low histamine diet and am feeling much better.

    I am so motivated to stay well now, I have to explore all the options. But in this case, the grass isn't greener on the roadmaps diet side. It's greener here on the low histamine diet...with my half empty cup. :)


  7. I am finding that the low histamine diet is helping reduce how inflamed and puffy I feel, especially when glutened. I have avoided all cruciferous vegetables (and legumes) for a very long time because they make me feel like I have balloon animals forming in my abdomen. But some cruciferous veggies are allowed on the fodmaps diet. And some of the fruits allowed on the fodmap diet, like strawberries and pineapple, are very acidic and possibly irritating, making things worse.

    Understanding that everyone is different, I prefer the low histamine diet. My whole body feels better and if I do get contaminated, the consequences don't seem to take as long to resolve. It has really improved my DH!


  8. I had a rash like that. I also have DH, but there was a similar looking rash mixed in. It was pellagra, a niacin deficiency. Celiac disease prevents absorption of nutrients. Pellagra is often associated with alcoholism, so the doctor might not think of it as applying to your child's case. Many doctors cannot recognize nutritional deficiencies in our well-fed society.


  9. Hi. I had very low vitamin D levels, too. I took high doses of D3. Improvement was slow until I added flax seed oil for its Omega 3's. Progress was much better, but I didn't really feel healthier until I also supplemented other fat soluble vitamins, A and E. Just seemed like common sense, if I'm low on one fat soluble vitamin because of malabsorption, I'm probably low on the other similar vitamins. It's been several months and I'm feeling much better now.

    It just seems like common sense to supplement the whole spectrum of fats the body needs but doesn't get with celiac disease.


  10. Ask for a "DO" list! Keep a list of all the things you are allowed to have posted on the fridge. My brain needs help to remember things when I get glutened. Having all the options options within view will help you to put different items together in a variety of ways.

    I have grabbed a seemingly innocent bag of potato chips, too, and lived to regret it. Beware of lentils!!! I made lentil soup last week and got sick. Turns out, lentils are harvested and processed on equipment also used to process wheat! I was astounded! The lentils were the only thing I could think of that could possibly be the culprit. Crazy, right? First place to check was here to this forum! So relieved to find I wasn't the only one!

    When I have sick days, like after the lentil episode, I would rather hide under my blanket, but I make soup first. Put it on in the morning, let it simmer all day. Throw in things that don't need to be chopped since your finger is hurt. (Hope that heals quickly.) Bone broth is very healing. Small, whole veggies ,etc. They will be soft enough to chop with a spoon after cooking a while. I always have a pot cooking or a bowl of leftovers in the fridge. Alternate with a salad or something else you can make easily so your taste buds don't get bored.

    I've just recently found the low histamine foods diet and it does help. After I have been on it a while, I've found I can have a few peppers and tomatoes. Perhaps you'll improve to that point, too. Keep trying. We're on a bumpy part of the road right now. Remember that after a difficult climb up a hill, there's usually an easier road down. Just don't coast too much lest you fall off the wagon again! ;) Be encouraged!


  11. Hi! I've been lurking for a while but was so moved by your posts that I had to say something.

    You're not alone. I've had a long struggle to diagnosis and am just beginning on the road to recovery. The journey is very difficult but so worthwhile. Keep going! It will get better!

    I was undiagnosed for fifty years. I've suffered from gluten ataxia while my family, friends and doctors thought I was just a crazy and depressed hypochondriac. I have been diagnosed with PTSD as well. I understand how frustrating it is not to receive the diagnosis and instructions that can change and improve your life. Be aware that gluten is used as a filler in some medications. The antidepressants prescribed to me had gluten fillers and only exacerbated my symptoms until I was put in the psyco ward. The Others just don't know how bad gluten is because they can't experience it for themselves.

    Find simple foods that you know won't cause any reactions right now. Stay on them for a few weeks. As you start to heal and feel better, your tolerance will improve and you can slowly try one new food at a time. While you are on a limited diet, be careful to avoid cross contamination. Maybe that means not going out with friends. Instead invite one or two to your house and explain your dietary restrictions and even serve them gluten free foods you can enjoy together. Impress upon them the seriousness. I find people are often insensitive because they don't understand. Or they are scared it could happen to them. If they are open to instruction, they are good friends. If they are not open to your information, don't waste your time. You've got more important things to do. Celiac disease does weed out people who can be toxic in your life.

    When you get too overwhelmed or frustrated, remember that you're on a difficult part of the journey and the only way out is to keep moving forward. Even if that means you need to hide under the blanket for a while. It's okay. Be nice to yourself. Be patient with yourself. Be understanding with yourself. Listen to yourself. You may feel that you are only one who understands completely and that's okay.

    All Celiacs are different with different degrees of sensitivity. I'm hypersensitive and can't tolerate the twenty parts per million in "store-bought" gluten free foods. I get tired of cooking every single meal. I have to carry my own food with me. But it is do-able, because we ARE worth all the effort!

    Address the malnutrition aspect of Celiac disease. Get your vitamin D level checked...mine was extremely low. I'm not a doctor, but I found a Gluten free multivitamin, vitamin D supplements and Omega 3s helped me immensely. Keep us updated on your progress. This Celiac cares!

    I look forward to the day where there will be a Gluten Free Community...like a Nudist Colony, but clothes can be optional. :)