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Posts posted by GFinDC

  1. Hi Nikita,

    Welcome to the forum! :)

    Some people with celiac disease also have DH (dermatitis herpetiformis).  Not all have it, but some.

    Some people do seem to be born with celiac disease or get it very early, but many more develop celiac later in life.

    Celiac disease is not really an allergy, but is an auto-immune condition.  Allergies involve IgE reactions, while celiac disease involves IgA and IgG reactions.

  2. I agree with eliminating oats.  I get sick from oats and that has not changed in over 10 years.  So it  is possible she will always have a reaction to oats.

    I also agree with trying to keep her on a mostly whole foods diet.  It is a good thing for her to learn to eat whole foods vs processed foods as they should be her main diet for the rest of her life.

    That being the "rule" there are always exceptions for kids.  I suggest Aldi's gluten free wraps or Mission brand corn tortillas.  Stay away from gluten-free bread for a few months.  Some people react to the zanthan gum they use in a lot of it.  If she is still on dairy try taking off it for a few months.

    I can eat Sour Patch Kids and Planters mixed nuts.  Oh, and Lara Bars are good too.  Those are probably ok for a treat.

  3. 11 hours ago, Chris H said:

    I’ve had exhaustive tests for both PF and diabetes, as that’s what the doctors thought it was. I’ve spent about $30,000 on trying to get a diagnosis on my feet, and I finally landed on gluten ataxia. When I took gluten out of my diet, for the first time in years I actually had pain relief. I also had all these very hardcore withdrawal symptoms, dizziness, fatigue, weak neck, lump in throat, balance problems. All neurological, they finally subsided and the pain in the feet was still better, but I’ve been a bit up and down since. I’ve become a lot more sensitive to certain foods now, I’m gluten free, dairy free and corn free, but I still feel like I’m reacting to something. It’s hard

    That's good they ruled out the T-2 diabetes and plantar fascitis Chris.  That's 2 less things to worry about!

    Celiac disease can affect the nerves directly.  Some people's bodies will attack the nerve cells instead of or in addition to the gut.   In some cases, the nerve attack is on cells in the brain and is called gluten ataxia.  Gluten ataxia can cause problems walking and balancing.

    An elimination diet is a good way to discover problematic foods.  There are few legitimate medical tests for food intolerances but our bodies can let us know about problem foods.

  4. Hi,

    If you have DH, you have celiac disease.  Only people with celiac disease get DH.  So it might be better to go for a DH diagnosis since that testing is less invasive than the endoscopy / gastrocopy.   The gluten challenge for DH is 12 weeks of eating a small amount of gluten.  But the test is to take a small skin biopsy from next to a lesion, vs an endosocpy / gastroscopy.

  5. Hi,

    Welcome to the forum! :)

    Celiac disease affects the small intestine, not the large intestine.  So pain from the large intestine could be a symptom of something else.  That something else could be an additional condition that you have on top of celiac disease though.

    So, yes, getting all your test results is important.  It could be you are making too much acid and or the acid in your gut isn't being neutralised.  The acid in your stomach is neutralized by bile created in the liver and released by the gallbladder into the gut.  People with celiac seem to have gallbladder problems fairly often.  So that might be a good thing to ask about having checked.  They do a test called a HIDA scan to verify the gallbladder is functioning correctly.  Sometimes doctors will remove the gallbladder but that's not a great thing to do.  If the gallbladder is not too damaged it is better to remove the irritant (probably gluten) and let the gallbladder heal itself.  That isn't always feasible but sometimes is.  Your GI doctor can best advise you.

  6. 8 hours ago, Dane said:

    So I did some checking on hormel.  I ran into some concerns when I saw oatmeal and also the wheat protein (which I havnt really came up a definitive answer to) I was in no way willing to take the risk.  Similar problem with the wolf brand (oatmeal). Used to love oatmeal but no arch enemy unless certified gluten-free and is a close friend of cross contamination.  I love to cook, I have never ever put oatmeal in my chili so not sure on their angle.  I am about to look at the Dennison’s as I am not familiar with it at all.  Thanks for the input!

    Definitely stay away from the wheat protein.  It will cause a gluten reaction.  I am with you on the oatmeal being a problem too.  Personally I avoid soy also.



    Ingredients: Water, Beef and Pork, Textured Soy Flour, Oatmeal, Corn Flour, Chili Powder (Chili Peppers, Flavoring), Contains 2% or less of Sugar, Salt, Modified Cornstarch, Hydrolyzed Soy, Corn, and Wheat Protein, Tomato Paste, Flavoring, Yeast Extract, Spices.

    Soy ingredients present,Wheat ingredients present,Gluten present,Oat ingredients present


  7. On 3/28/2019 at 6:13 AM, OrangesAndMelons said:

    There's no room for a second microwave/fridge/freezer… the other stuff, I guess I'd have to keep in my room if I couldn't trust people. And I wouldn't be able to use the oven?


    I live in a shared house with gluten eaters.  You can use the oven and the microwave.  At least I do and it seems fine.  I keep some separate silverware for me, a dorm size refrig for some of my food, and I rinse plates and such before using them.  I have separate pots and pans to use.  If I put food in the shared refrig, I put my gluten-free food on the top shelf to prevent possible crumbs falling on it.  I also wash my hands a lot.  I wipe down counter tops some too 

    • Upvote 1

  8. Hi Sabine,

    I live with gluten eaters and and do fine being gluten-free.   I mostly eat at home and prepare my own food.  I keep silverware and pots and pans of my own separate.  I also have a mini refrig that I keep my food in.  I rinse dishes before using them.

    I seldom eat out but when I do I go to places like Texas Roadhouse or Ruby Tuesday.  But we are talking maybe a few times a year.

     I eat mostly meats, veggies, fruits, eggs and nuts.  I do eat some gluten-free bread but mostly eat Aldi gluten-free wraps.  If I eat cereal it is mostly chocolate Chex.  I eat it dry.

    I also avoid the other foods that cause me problems like oats, nightshades, dairy, soy, grapes, carrots, celery, strawberries, caffeine, etc.

    I use stevia in tea instead of sugar.

    It seems to me that people often have GI symptoms for a year or two after going gluten-free.  I keep Pepto Bismol and peppermint Altoids around.  I have some DPV4 also.

  9. Welcome to the forum Joanne,

    I am sorry I can't help with the skin products question.  Being a man I don't use such things myself.  But I know they have been discussed on the forum many times before so maybe a helpful person will come along soon with info.

    Basic info regarding starting the gluten-free diet for you though:

    Try to stick to whole foods cooked at home for several months at least.  No eating out at friends or restaurants.

    You may find it helpful to stop all dairy for a few months also.

    Oats are a problem for some of us as well as wheat, rye and barley  So it might be good to avoid oats also.

    Your rash could be DH (dermatitis herpetiformis), which is a an itchy skin rash only people with celiac get.

    Sometimes people starting the gluten-free diet think they will recover in a couple weeks.  But it is more common for recovery to take months or years.

    It would be wise to have your doctor check your vitamin and mineral levels for deficiencies.

  10. Hi TDZ,

    My understanding is the same, a full gluten challenge is needed for the DH diagnosis.  The method the use for DH is to take a skin biopsy from next to a lesion, not on it.  They check the biopsy for IgA antibodies.

    I don't know of any way to shortcut the process and avoid eating gluten to get tested.  There may be a test some  day that doesn't require it, but for now I don't think there are any out there.

    One thing he might not have tried is avoiding iodine.  Some of the members with DH find iodine makes the rashes worse / longer lasting.  He'd need to look up iodine containing foods and avoid them.

    I suggest talking to the doctor and asking for a dapsone RX.  He may as well try it since it might help  Dapsone is a temporary treatment though and not a long term solution.

    Welcome to the forum! :)

    • Like 1
    • Upvote 1

  11. 1 hour ago, Diama said:

    I’ve been reading some studies on use of CBd oil for celiac disease which sound supportive for using it. A friend is using 5 drops every night and day and she swears her celiac symptoms are gone.  Anyone else finding the same?





    I never tried it myself.  But celiac is not cureable so not sure what the point is?   Celiac symptoms are widely varied and there are treatments for some of them.

    • Upvote 1

  12. 1 hour ago, Johna1 said:

    Hi Ennis,

    Thank you for your reply and time really greatful... wow I really have a lot to learn.

    I really thought is was fonig good by having 5 or 6 pieces of food a day, when you knock out all these items I’m really left struggling on what to left to eat, everything seems to have a bad point in on way or another really left unsure on what to eat 😞

    Hi Johna,

    Great, now that we have talked you out of eating all that food you can send it to me!  :)

    Just kidding!

    Johna, rinsing the nuts and drying them should really help if they are contaminated.  But it would be better to check with the nut company and see what they say about gluten contamination.  Then buy nuts that are safe.

    How about eating beef, pork, chicken, fish, eggs, sweet potatoes (yams), beans, peas, cauliflour, cabbage, grapes, chickpeas, amaranth, quinoa, broccoli, etc, etc, etc.  All these and more are naturally gluten-free foods.  Here in the USA there is a chain called Aldi's that sells gluten-free wraps/tortillas.  I don't know if they have the same wraps in the UK stores.  But they do carry a number of gluten-free foods there.

    https://www.aldi.co.uk/special-diets/gluten?text=gluten free

    Here is a thread on microwave buns you can make.


  13. Hi Johna,

    There is a thread on iron running right now that might interest you.

    Yes, there can be gluten contamination in nuts.  Planters nuts are a pretty safe choice though.  They list any gluten ingredients on the package.

    They could be gluten in frozen fruit I suppose.  I don't think its real common though.  There wouldn't generally be any gluten needed in a fruit packaging operation IMHO.  But is good to check the packagers website for specifics.  Many food packagers have information on their gluten content available now.

    To be honest, your GI system may be upset because of the healing process.  It may take several months for things to improve.  Simple foods with little spice are a good way to go.  All home prepared food and no restaurants for 6 months is good.

    There is also the possibility you are reacting to one or more of the foods in your revised diet.  Maybe eliminate one of them and see what happens?  It may be something you are consuming on a regular basis is not agreeing with your digestion.  Coconut?  strawberries?  other?  A good thing to consider is the common food allergens.  Link below.


  14. This article on Healthline is where I read about calcium interfering with iron absorption.  It also says citric acid helps promote iron absorption.  So eating a cheeseburger doesn't help your iron level nearly as much as eating a hamburger with a squirt of lemon juice.


    It can take months to recover iron levels even with supplementation.  We just don't absorb it well.  Plus with celiac damage to the small intestine we don't absorb foods well regardless.

    People can have GI symptoms from taking large doses of iron supplements.  So it is probably better to take more moderate amounts daily than a larger dose once a week.  The same goes for vitamin D.  Vitamin D is better absorbed in a moderate daily dose than in a large weekly dose.

    This link lists some iron rich foods.  I don't agree with eating tofu though as soy is a risky food and not great for intestinal health.  So take that one out of their list IMHO.


    You can take psyllium husk capsules for extra fiber.  Psyllium husks are available at lots of health stores/pharmacies.  Here's one source, there are many others.


    Many gluten-free processed foods are not fortified with extra vitamins and preservatives like their gluten counterparts are.  So you are not getting your vitamin pill in a slice of bread or bowl of cereal now.  Instead of vitamins many gluten-free processed foods are loaded with extra carbs and sugar.  So not a great trade really except that the gluten is gone.

  15. Hi Johna,

    I think its pretty usual to have GI symptoms after first starting the gluten-free diet.  One of the possible issues is bacterial overgrowth.  When your intestines begin to heal, the surface area of the villi increases and that provides more real estate for bacteria to colonize.  So things may get out of whack from that change.  It can take time for the bacterial balance to re-normalize.  One thing that may help is avoiding all sugar and carby foods for a few months.  Bacteria thrive on those sugars and carbs and an overgrowth can cause symptoms.

    There is also the possibility of dairy reactions due to villi damage.  Another tricky thing is oats.  Oats are often cross-contaminated.  Also some of us have an immune reaction to oats like we do to wheat, rye and barley.

    So removing dairy, oats, sugar and carby foods may help.

    • Like 2

  16. Hi Brian,

    She can try some Pepto Bismol.  It may help with gut irritation.  Also peppermint tea is good for gas.  Pepto also has aspirin in it so that can help with pain.

    Staying off dairy for a few months is a good idea and also oats.  Some people with celiac react to oats just like they do to wheat, rye and barley.

    Eating simple whole foods is best for starting the gluten-free diet.  Try and avoid the processed foods.

  17. Hi Trillium,

    You can post about NCGS here if you want.  Although this is a celiac forum, we know that there are many more people with NCGS than celiac disease.  And some people with celiac disease are not biopsy proven or otherwise doctor confirmed celiac, so they get labeled NCGS instead.  For the most part, both groups needs to follow a gluten-free diet.  Although there is some thinking that people with NCGS may actually have a problem with FODMAPS instead.  That research is new and we don't know how the numbers will break down.  So, it's fine to talk about NCGS here.

  18. Hi Wade,

    That's great that your numbers are going down!  :)

    About dairy issues; lactose is a form of sugar that is present in cow milk.  Casein is one of the proteins in cow milk.  You can form an allergic reaction to a protein but not a sugar.  I am not sure why the doc said casein is the problem.  More often newly gluten-free celiacs have trouble digesting lactose.  That's because the villi lining the small intestine produce an enzyme called lactase that digests lactose sugar.  Often the trouble digesting lactose goes away once the intestinal villi are healed.  If there is a problem with casein though, it is usually not something that goes away.  I have trouble with diary still so I quit eating it years ago.  If you can eat hard cheese without problems then it is unlikely you have an casein reaction.  Most of the lactose is digested by bacteria when making hard cheeses.  So that's actually a pretty easy test.  If milk bothers you but hard cheese doesn't, then you are most likely reacting to lactose, not casein.  Because there isn't much lactose in hard cheeses.

    I think quite a few of the long-time female forum members are over 50 too.  I'd give you a list of them but I don't want to get banned/flamed. :(  I shouldn't talk anyway though since I am over 60 myself.

    It seems to me the first 6 months of the gluten-free diet are probably the hardest for many.  Then again the first 6 years are no picnic either. (Kidding!) :)  Some people seem to feel much better in 6 months although 18 months to 2 years may be a good time frame for many to have healed their guts significantly.  It can take some time for the immune system to calm down after going gluten-free.

     You are very welcome as far help goes.  We like to help people who are going through the same things we did at one point.

    On 2/13/2019 at 8:20 PM, GFinDC said:

    Hi Wade,

    Welcome to the forum! :)

    ...You should have to throw out your food though, or towels etc.  ...

    I boo-booed on my reply above.  That should have said

    "You should NOT have to throw out your food though (if it's gluten-free) or towels etc."

  19. Hi ramie,

    That's correct, you need to avoid gluten and gluten cross contamination.  The reason tiny amounts of gluten matter is our immune systems are geared towards fighting germs and such microscopic things.  So the immune system detects and reacts to very small amounts of gluten.  And once it starts reacting it can keep attacking for weeks to months.  Great for killing off germs and their offspring, but a bummer for us when it's fighting our intestinal lining.

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