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JaneWhoLovesRain last won the day on July 21 2019

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  1. I'm wondering if anyone has found they have a problem with this granola.  I was happy to find this as it is a good dollar or two less expensive than other brands and it tastes great.  But starting a day or two after my first serving of it my intestines are totally messed up.  It says "gluten free" but nowhere do I see where it says "certified" or that little picutre of wheat with a red line through it.


  2. Now day 6 :(  I thought I was better, I felt better and did  lot of gardening this morning, then came in to eat lunch and suddenly felt sick and the di came back. Very distressed over this.


    The thought of some food carrying germ has come to my mind many times but I am super ocd about washing my fruits and veggies before eating, always worrying about getting listeria or e-coli or any of those things.  I even wash pre-washed stuff, I even wash oranges!!  And I won't nibble on a grape in the store to see how sweet or sour it is because I know they aren't washed.  So I've  kind of put the idea of of anything along this line aside, not to mention I haven't heard of any recent food borne illnesses.


    I know my diet can be rough on the intestines but for 5 weeks I had no problem at all, it wasn't until week 6 that I started to feel unwell.  That is what is so confusing about it.  If there was even the possibility of having cross contamination I would consider that but with a diet consisting mostly of veggies and fruits I don't know where the problem could be.  I have a gluten test kit and tested my pumpkin seeds and Planter's mixed nuts and they both turned up negative.  I have one more test left and I'd try it on something but I have no idea what to try it on.  Orange juice??


    I think I'll head over to the emergent care, hopefully they won't just brush my symptoms aside.


  3. UGH!!  I am now on day 5 of diarrhea and am getting worried.  Having dermatitris herpetiformis my GI symptoms with celiac have always been minimal.  I accidentally got glutened earlier this year (didn't realize baking spray had wheat and was eating muffins in which the tin had been sprayed with this for about 3 weeks) and my rash which had been gone for 3 years came back, my tum-tum was okay though, no problems there.  So I doubt this has anything to do with being gluttened but I wanted to ask if anyone has any insight or idea what this could be.


    Six weeks ago I started going to a chiropractor for something unrelated and he put me on this new diet, basically no carbs or grains, no sugar, no dairy, no nightshades, no chocolate and lots of fruits and veggies.  Meat and chicken are allowed as are nuts and eggs.  So for the last six weeks I've been eating a big salad of raw kale, spinach, carrots, cucumbers every day and in general have upped my fruits and other veggies.  If the diarrhea started right after the diet I would say aha, but for the first 5 weeks I ate this diet with no problem at all.  It wasn't until six weeks that this all started.  I have  no fever and my appetite is okay but I feel exhausted and achy, no energy at all.  And I'm very worried, afraid I will never be well or that it is something serious.


    I have to say I'm not real happy with this diet and the last 2 days I have been eating foods that are on the no list (granola, tomatos, potatos but not a lot of these).  This doesn't have any connection with the diarrhea cause that started several days before I strayed.  I was on the thin side to start with and have now lost about 10 pounds and am seeing bones stick out that I never saw before - I don't like this at all.  Do you think there could be any connection between the diet and the lousy intestines after having no problems for 5 weeks?


    Oh, one more thing.  My magnesium was on the low side in January so I've been taking supplements for that.  A couple weeks ago I had my blood retested and my levels are back up so I stopped taking the supplements last week, and it was a couple days after that the diarrhea started.  I only mention this because it is kind of unusual.  Usually people get di when they start magnesium, but not me!  I get it when I stop.



  4. Hi Loverbug - yes, I've been down the scabies road and so have many others here.  The dermotologist I saw insisted it was scabies because it itched so bad, he said dh does not itch (he was very stupid). My PCP's PA also said it was scabies.  I saw another dermo and had a biopsy for dh but it was negative, too late I found out she biopsied a lesion, not a clear area. This doctor said it probaly was not scabies.   I live alone, I had virtually no physical contact in the weeks before my rash. Unless you can get scabies from a grocery store cart it would be almost impossible for me to have had it but they insisted that is what it was.  No one ever did a scraping.  If I had it to do over I would not have done the scabies treatment because now I will never know with 100% cetainty that it was dh I had.  It was a GI doctor who told me I had dh/celiac but by the time I saw him the rash was 99% gone.  I also suffer from vertigo attacks and because they may be gluten related it is not safe for me to take the gluten challenge so I was told to assume I have celiac and never eat gluten again.  My biopsy came back as possible allergic reaction, which sounds similar to your possible medication or bug bite. 


    At the timeof my rash I had been gluten-free for a year or two but I believe I had cross contamination.


    There are a lot of similarities between the two but also some differences.  Both itch like the dickens, but dh itches more..  You wrote "so extremely itcy I serously wanted to die."  I so well remember thinking that if I had to live like this for the rest of my life I would rather be dead.  A classic symptom of scabies is that the rash is between the fingers; it dh it presents mostly on the knees, elbows and buttocks.  That's where mine started but slowly spread elsewhere.  Mine was exremely bilateral.  Almost a mirror image from side to another.  Another dh sign is burning a few hours to a day or two before a new area of breakout.


    Did you husband or daughter ever break out?  If not, it would be quite unlikely that you have scabies, it is really catchy!!  The dapsone could definitely be the reason things are getting better.


    Can you post pictures? 

  5. RIta - I had poison ivy quite regularly as a child and can easily tell the difference.  They both itch terribly but there are differences.  DH will be symetrical and the blistering isn't as obvious.  For me the majority of the poison ivy would be gone in a week but DH seemed to last forever. Also my skin was much more sensitive and inflammed with DH.  They felt different, but I don't know how to explain a sensation. :unsure: Have you tried taking an antihistamine? 

  6. Hi - I'm wondering if you are eating anything that has the ingredients sorbitol  or manitol or inulin.  These give me terrible stomach and intestinal cramping and diarreah and nausea.  They are right at the top of my do not eat list along with gluten.


    Edited to add - xanthan gum can do it also and unfortunately it's in a lot of gluten-free food as well as non gluten-free food.

  7. Personally I think if my dentist has sent me a similar letter 15-20 years ago I would have 1) not believed him for a second that I might have celiac and 2) freaked out cause it would be scary to get a letter like this.


    However, I will say that if he examed my mouth/teeth and then verbally told me his findings it would have gone over much better.  He could have answered questions I had, reassured me I'm not going to die within the week, given me a print out, offered to write a letter to my doctor, and also told me that chances are I do not have celiac but I should perhaps be tested because there is a slight possibility of it, and it would be good to know this sooner rather than later so I can start treatment.  I think if any medical doctor/dentist sees something that is not in his field of expertise but is concerning he has an obligation to inform the patiet (for instance if the eye doctor notices a bad looking mole on the tip of a patient's nose he needs to tell the patient to get it checked out and follow up to make sure this happens, unfortunately most doctors don't have time to make sure the patient follows up.)


    I remember going to a new dentist 15 years ago and the hygenist commented on something about my teeth, I don't remember exactly what it was other than some sort of abberation such as ridges or pitting or something that I now know can be indicitive of celiac but back then I hadn't a clue.  This along with a lifetime of multiple cavities, root canals an crowns should have clued a dentist in somewhere along the line that something might be going on but other than this one hygienist there has never been any mention of anything at all by any other dentist or hygenist.  Probably most dentists are as clueless about celiac as other doctors.  SInce my siblings have similar dental issues but do NOT have celiat it may just be a genetic thing.


    (As an aside I just did a search of images of "teeth celiac" and I've got to say my teeth don't look like any of those. IMH, I think the vast majority of teeth problems are not celiac related)

  8. I am saying that just because the product is made in a facility where wheat is also used does not necessarily mean that it contains gluten. It may mean that there is a slight risk of contamination. If you are unsure, call the company. I also consider the type of product.

    Many products which are safe for us are made in facilities where there is wheat present--somewhere on the premises.

    Consider also that this label is completely voluntary. If you don't see a disclosure, don't assume that the facility is gluten-free.

    And frankly, I don't personally believe that gluten-free facilities exist at all. Just because you don't intentionally bring gluten onto the premises doesn't mean it isn't there. An employee may accidentally (or intentionally) bring it in. That driver who just delivered the tapioca starch had a Big Mac for lunch and didn't wash after eating. Why would he? We are taught to wash BEFORE eating (many don't bother with that either). The postal worker had a donut on her break, and then handled your mail. I could go on and on.

    In short, for me, a shared facility is not a concern. Shared equipment, more so.

    Thank you for the explanation Peter.  I appreciate it.

  9. I know you checked the Smarties website but from your post I am wondering if you are saying that you are buying the Smarties brand name candy or the store brand candy. You say the label depends on what store brand you are looking at, you you mean Target brand candy or Smarties brand candy at a Target store? There is a significant difference there, especially since many large chains have their own brands with their own ingredient list which can be different with every package of similar candy.



    Adelaide - all the smarties candies I see say "smarties" on the bag and are wrapped the same cellophane wrapper thas says "smarties."  So what I am wondering is are ALL smarties the same, that is do they all come from the same smarites factory, or are all smarties different, that is CVS smarties are different than Target smarties and they are different than Whole Foods smarties.   Store brand Peanut Butter cups can't say Reese's on them and I would assume they are made in a different factory than Reese's (but maybe not).  But because all smarties say smaties I'm wondering if they are all the same.  Make sense?

  10. A product can be gluten-free as the term is generally understood without having to be made in a dedicated gluten-free facility.

    Do any gluten-containing products ever enter your home? If so, your home is a shared facility.

    Do these products get eaten with dedicated plates and utensils that are washed in a dedicated sink or dishwasher? If not, you have shared equipment in your shared facility.

    I'm probably dense because I really don't understand what you are saying.   Are you saying if a product isn't made in a dedicated gluten-free facility it is or isn't gluten-free?  If the label says it's processed in a facility with wheat is it safe to eat?  Are my bag of smarties, which note that everything but wheat may be processed in their facility, safer than another bag which does mention wheat?

  11. I just did a search on this and found lots of topics so I guess I'm bringing up an old subject.  But most of what I read was a year or older so maybe there is some new info.


    Something is making me not feel well and it is either the Utz sweet potato chips or smarties I am eating.  I thought the chips were okay because the bag says gluten free as well as their web site.  But some of the posters here state they have had a problem.  Yet others say they have no problem at all.  Because most of the posts pertaining to this are so old I'm wondering if there is any "late, breaking news" on this topic.  Sounds like at one point Utz admitted there could be cross contamination but at other times said no chance.


    I want to eat the chips but now I'm afraid.


    Any thoughts on Utz?

  12. I'm talking about the candy, those little round pasel colored sugar thingies.  Their web site says they are gluten free as to several other sites.  But some of the packaging says they are processed in a facility with wheat etc.  But other packaging says they are processed in a facilty with eggs, soy, etc, everything BUT wheat.  It all depends on what store brand I am looking at (such as Target, CVS, Price Chopper, etc.)  If it says wheat on it I don't buy them but otherwise I will pick up a bag every 2 or 3 months.


    I ask because I have been munching on these the past couple of days and today my intestines are rumbling something awful and I feel generally yukky.  The only things different in my diet are the smarties and Utz sweet potato chips which clearly say "This is a gluten free food" on the bag


    Any thoughts?  Is the label just a cyb kind of statement or should this be taken seriously.  The ones I am eating do not mention gluten so I don't think that could be the problem.  But I can't imagine what else it could be.


  13. I have been feeling terrible all week, loose stools, abdominal cramping, yukky stuff.  I have looked and relooked at everything I have been eating and I can't find anything that could have gluten.  Everything is lableled gluten free or assumed to be gluen free (bananas, apples, corn, spinach, etc.)


    The only culprit I can think that may possibly be making me feel like this are the new cookies I bought, Glutino's fake vanilla oreos.  They are very yummy but do contain xanthan gum.  In the past I thought I may have had a problem with xantham so I limited it as much as I could.  Maybe I would have it once in a week with the chicken marinade.  But I have been eating 2-4 of these cookies a day all week.


    Because xanthan gum is used in so many baked gluten-free products and I never hear of it being a problem I wonder if it is or isn't.  I read on one web site it can be used as a laxative, but another one said it is safe with no side effects.  (by the way if it makes a difference I have a definite problem with sorbitol)


    So I'm looking for your "experiences" with xanthan.  Anyone find they cannot tolerate it?

  14. I used to bake up a fresh batch of bread every Sunday, it would smell so good and taste so good  but those days are over . . . I think.  Has anyone had luck with bread machines and yeast bread?  I know there is one brand of machine that is recommended for gluten-free and it's kind of pricey but I don't remember the brand.  I'm about ready to splurge though, if it will do the job.  I'd love to know what kind of luck you have or haven't had with bread machines and eating gluten-free.



  15. Hi tinpins - I just want to say that your rash looks very much like mine did along with the scratch marks (I have some of my pics posted in the photo bank thread).  It was the worst itching rash I have ever had in my life, like a combination of poison ivy, sunburn, chickenpox, hives - burning, painful (showers were terribly uncomfortable) and itchy, waking me in the night over and over.  The spots matched the classical description, elbows, hips, back of neck, knees, slowly spreading elsewhere, and in an almost perfect bilateral symmetrical pattern.  My DH test came out negative but I later saw a GI doctor who said he is 80-90% confident I have celiac.  He told me to never eat gluten again, not even a tad bit of it and definitely not the amount one needs before testing. 


    There is hope for you, a smily face at the end of the tunnel.  There is lots of food I miss but knowing what it could do to me if I eat it makes it much easier. 



  16. I'm getting tired of trying to interpert labels and I doubt I'm alone in this . . . . . I don't go to Trader Joe's too often but stopped by today because I was in the area.  I wanted to buy some nuts, cashews, almonds, dried fruit, etc. and ended up frustrated.  Some of them have an allergy statement saying they are manufactured in a facility with wheat but others don't have this.  Can one safely assume that those that don't have the label are safe to eat?  I ended up buying one bag of "raw blanched slivered almonds" that does NOT state it is manufactred near wheat, but I honestly don't know if I dare eat these or not (I don't take chances with this stuff).  Other almonds and nuts do have the statement.


    I have Trader Joe's gluten-free list and these are not listed there so I guess I should assume they are not safe (even though it doesn't say they aren't safe).  Huh!  I'm confused! :unsure:

  17. I picked up some of their gluen free granola recently only to discover that is is manufactured in a facility that uses wheat and gluten along with all the other allergens.  So, what's with this?  I can understand a food with wheat in it or one that is assumed to be gluten-free (for instance tuna fish) having this warning, but to have "gluten free granola" on the front, well, it doesn't make sense to me.  Does it to you?  Needless to say, I'm not going to be the guinea pig that tries this one.

  18. Am I the only one who has problems getting to the forum?  I would guess that about 99% of the time I try I can not get here (yes, right now is the lucky 1%, I probably tried 25 times today and this is the first time I've had success).  I will go to celiac.com, click on the forums button and after about 60 seconds of waiting I get a message that says the site can't be found.  This has happened almost continually since the new set up a couple of months ago.  Previous to that I had no problems.  I was previously advised to remove cookies and a few other things but nothing has helped.  And most likely I won't be able to respond to this post or even see if anyone responds with helpful info because I cannot get here.



  19. Thanks for your input, it is very helpful.  I have read they can be a vitamin B deficiency, yeast or possible baterial infection.

    I hope it is as simple as a vitamin b deficieny.  I read this is rare in the US because most of our cereals and breads are fortified with vitamins.  But since I'm not eating fortified breads and cereals or dairy products or red meat I could very well be low in this.  I bought some B supplements, we'll see how they work.  I have my 6 month dental cleaning appt tomorrow, maybe he will  have some input.

  20. I finally has my appt with the GI doctor this week. I made the appt in November right after I found I tested positive for the gene and this was the first available so it's been a wait!

    He couldn't have been nicer, I don't think I have ever had a doctor who sat there and took the time to patiently listen and ask questions as if he had all the time in the world. He even looked with interest as the pictures of my rash, which is the total opposite of what my pcp did. I was impressed!!

    He feels the likelihood of me having celiac is 80-85%, or maybe he said 90%, but it's up there. The only thing that didn't fit was the fact that the rash was BEHIND my knees, rather than in the FRONT, but all the other rash spots fit, elbows, shoulders, hips, neck, symmetrical, etc as did other gi symptoms and my vertigo/off balance issues. And thank God, he said the pictures do not look like scabies. He sent me for blood work - I'm not sure what, I assume the basic celiac stuff, but I trust him enough so that I did not have to write it down and come back google to be sure it is what it needs to be. He wanted to take it even though I have been gluten-free for some time, he said he has seen blood work come back positive when people have been gluten-free so maybe mine will. And I did do some gluten experimenting over the Christmas holidays so maybe the blood will show something. In any event, he told me no more experimenting, no more gluten, none. He also wants me to have an endoscopy and colonoscopy (been 7-8 years since the last). Not looking forward to either of these. Meanwhile, I have to have a breast biospy in the beginning of Feb and that is more or less taking front seat to the celiac stuff. He was even nice about that and told me that certainly takes precedence and the scopes can wait and to be sure and let him know what it shows, and good luck, etc. I was diagnosed with bc almost 10 years ago, very tiny and early, now something else has shown up and I am more than a little anxious about this.

    All in all, it was an excellent appt and I am glad someone finally listened to me and believed me instead of blowing me off.


  21. I think I need to clarify. I am referring specifcally to having iodine while having dermatitis herpetiformis, because iodine is know to aggravate dh; I'm not rerfering to having the contrast agent if there is a known allergy (not sensitivity) to shellfish or iodine, that is a definite contradiction. I'm wondering if the iodine will aggravate things internally the same way it does on the skin in someone who has active dh.

  22. I'm wondering if it is safe to have a ct scan with contrast, seeing that the contrast agent has iodine in it and one of the questions always asked if if one is allergic to iodine.

    I recently had a ct scan and refused the contrast and told the technician I have had a problem with topical iodine in that I break out in blisters if it is applied to my skin (this being from my experiment with the iodine patch). I did not tell him about my patch experiment nor I did I go into any further details with him but nevertheless he looked at me like I am nuts and asked if I am SURE it is iodine that I have a problem with. But I'm thinking if it can do what it does to my skin, what can it do to the insides of my veins?

    On the other hand, if I apply an iodine patch to an area that is not suffering from "dh type lesions" I do not break out in a big blister, it is only if it is applied to an area near a lesion that I do. So maybe I would be okay with the contrast agent since I don't have dh in my veins.