Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited


About jeanzdyn

  • Rank
    Star Contributor

Profile Information

  • Gender
  • Interests
    books, movies, Farscape
  • Location
    Northern Illinois

Recent Profile Visitors

5,679 profile views

  1. I have noticed more skin tags since my diagnosis of Celiac Disease and going gluten free.  A doctor has asked me if anyone in my family is diabetic, because "diabetics have skin tags and dark patches"..... my mother had the same --dark patches and skin tags but NO diabetes in the family.  I find the mention of insulin resistance and skin tags very interesting.  In addition I have started to crave sugar.... not sure what that means.....

  2. I do not take meds for depression and I do not want to, or need to.  I have these downward spirals periodically, but not regularly enough to call for meds.  I know the reasons for the downward spiral, and there is not a whole lot I can do about it, except to let it come and this too shall pass.

    I am all alone in the world.  No one cares about me.  My worst problem lately is the amount of travel for work and the huge difficulty of having a pleasing meal, that is warm food, and having that meal also be gluten free.  At home I have no problem, out on the road,... I am tired of eating flavorless crap,... it is very difficult to bring anything that requires refrigeration, because we check out of hotels and move every day,... there is no way to keep things cold enough all day long in a hot car.  I am not made of money.  Small towns don't have gluten free options.  I am over 50 and there are NO job options available to me --- no one wants to hire an old lady who they think will leave in a few years.  (I am going nowhere---I am flat broke, not a nickel to my name, where would I be going?)  

    In a nutshell it is a fact that: life is a b%$@# and then you die. 

  3. A few nights ago I had a shocking episode of diarrhea,....  It was like passing gas, but I knew that it was more.  By the time I got to the toilet I had a small mess to dispose of....   that got me to think about all of the myriad symptoms I have had lately.  Symptoms that seem to be getting worse.  Is this more than Celiac disease?  what is happening..... It is sending me down that spiral to depression. 

    All of the worst of my symptoms are returning,.... severe and extreme fatigue, acid stomach nausea, a shaky feeling, achy all over, headaches, flaking skin in specific areas (nose and eyebrows)..... I cannot tell if my stomach is asking for food or not.  I am on the verge of breaking down in tears. 

    Top all of that off with new nonsense from my workplace.... I have been told that, during a specific week, our department is "forbidden" from making any kind of medical appointment, as that will be viewed as avoiding a specific job.  I am in the beginning stages of worsening symptoms, and have a doctor appointment next week which was to be the start of figuring out what my body is trying to tell me.

    I am so upset, I don't know if I should eat something, or sleep, I don't know what to do..... 

    My job involves a great deal of travel, and maintaining a gluten free diet is very difficult --- too often there is nothing I can eat that is nutritious and that tastes good to me.

    I am really struggling to deal with everything.  I manage to do laundry and pay my bills, and somehow I work on the weekdays --I don't know how I do that, because I spend the weekends doing as little as possible due to exhaustion.  How I get through a work week is a mystery to me.... I must be on autopilot.  That can't be good.

    Thank you for giving me a place to vent my frustration.

    I wish that I could find a doctor who cared about figuring this out and actually helping me.

  4. I was lethargic and spent my weekends sleeping --up to 18 hours of sleep a day, both Saturday and Sunday.  After being gluten free for over 18 months I finally noticed that I was sleeping much less.  Sorry to say, but some things just take longer than others, and we are all different,.... you have to stick with the diet and give your body time to realize that it can stop fighting everything all the time.


    You are not stupid! You came here and asked your questions and laid out relevant explanations.... nothing stupid there....  

    I have found that taking a vitamin B12 supplement helps clear that brain fog.  In fact, when I first started the B12 it was like someone lifted a curtain! No more brain fog!




    Also, by the way, thank you!! For helping me to understand that I am NOT alone in this "laziness" --but IN FACT it may be part of the healing process of being gluten free (after being sick for my entire life until recently because I never knew I had celiac disease.).

  5. I think Diane hit it when she said other intolerance's , after going Gluten free I found I had a corn intolerance and it made me bloat and gassy .... So you may want to do a food diary. 


    I think that there are other food intolerances that are "hidden" by the Celiac or the gluten intolerance.  Like your body is working so hard to combat itself, in the case of Celiac disease, that it kind of fails to alert you to other problems.  For example, I never had an issues with citrus, then suddenly, after a year of being gluten free I was (and am) allergic to citrus!  I cannot have any citrus at all because the symptoms are like torture --burning, itching --no rash or eruptions, just terrible, terrible burning itching! 


    I am starting to have sensitivities to other things now (2 years gluten free).....  I really cannot help believing that my body, fighting the celiac symptoms, was "masking" other intolerances, allergies, and issues.


    And:  A food diary is an excellent idea!!  I kept a food diary for 7 years and it helped me to figure out a lot of things!!

  6. This past November I was ill.  I had digestive system discomfort with severe nausea and I had dizzy spells.  I finally tracked down the one thing I had consumed that I did not use for many years prior to this event.....  chewing gum containing ASPARTAME.  

    Aspartame is nasty stuff!!  I was so sick for so many days, accompanied with the dizzy spells, which become more severe as the days passed!!

    I chewed gum on 3 separate occasions, and I spit it out after only an hour or so, but that was all it took!!  I was sick for the next 3 weeks.


    I feel that many of these sensitivities and symptoms and issues may be heightened by being gluten free.  If you are gluten free your body can stop attacking itself because of the gluten and now it's attention becomes riveted to other things!!  Kind of like an unending nightmare.....



  7. itching again..... winter, so predictable....  this time I think it has to do with perhaps one of the following:


    corn products

    dairy (I sure hope not)

    tea? caffiene?


    this morning I have had my supplements, things I have taken daily for year and years with no symptoms that I am aware of.

    I have had water.  I was hungry, so I ate some sweet potato "pancakes" with butter and brown sugar.  


    It appears that the itching is dissipating after 72 hours of suffering.....  so now I am not sure how to proceed.....  I will drink more water throughout the day, and see if the itching continues to go away.....   My current plan is to probably have some ground sirloin and rice for dinner, maybe with some cheese....


    Please, God, please let the itching go away. please.

  8. Well, I finally saw the allergist. After I told him what I like to eat and what I had already known I was allergic to he tested me for things I like to eat. And he also tested me for the things I already knew I was allergic to. (I wonder what that will cost me...)

    Apparently I have sensitivity to eggs and nuts. Two things that never seem to have bothered me --ever, at all. So I am more unhappy

    now that I know this!

    Here I was, happy that I could at least eat eggs and nuts. Now I have to avoid them, at least for a few weeks.

    When I see the allergist again I am going to ask about this. The sensitivity to eggs and nuts was at the 'low' end of their scale for sensitivity, so I want more information! I have always (ALWAYS) gotten a flu shot, every year since I was 18 and now I am suddenly sensitive to eggs! what is up with that!

    Meanwhile, I still itch, but there are not any breakouts, no hives, nothing to see. Just some burning itching.... of course it is worse because I had to stop taking the antihistamine because I have a bad head cold and I really need drainage to happen.

    So, I am stuck between a rock and a hard place, rubbing instead of scratching, and trying not to lose my mind... trapped indoors all winter long.....

  9. In years past I have had horrible itching primarily on my legs. There was never anything to see, no rash, nothing. The doctors were always kind of puzzled. They would say "dry skin" --but upon examination it was not dry skin either. There never seemed to be an answer.

    I did a lot of hunting for reasons, looked up a lot of things on the Internet, looking for clues or hints of what to do.

    Once I found out that itching is one of many symptoms that can be related to hypo-glycemia. That led to me learning that I was ingesting an awful lot of sugar from many sources in my diet. I immediately cut back on anything with sugar listed as an ingredient. I did not use much sugar other than whatever sugar was an ingredient in some food item. Initially cutting back on sugar really did help with the itching. I got through an entire winter with less itching as a result. However this did not carry on into the next winter --despite decreased sugar intake the itching was back.

    I struggled with the itching for a few more years and then decided that maybe it had something to do with wheat. I no longer recall what kind of article or website I read that led me to this decision. Anyway, what I did next was to try a 'rotation diet' --I cut out all breads and pastas for 3 or 4 days in a row --the itching went away after about 3 days. So, at that time I thought a rotation style diet was the answer and that worked for me for a couple of years.

    Then I had the colonoscopy (and endoscopy) and they took the biopsy. I got the call from the gastroenterologists office about 5 days later telling me that I had sprue and then that it meant celiac disease. It was what I was afraid of and at the same time I was not at all surprised --because of that rotation diet!

    Anyway, after over 20 years of rather obvious symptoms I had nearly diagnosed myself.

    All that time I was afraid of having something like celiac disease, but all that time I was gradually modifying my diet too. That I why I have said that going gluten-free was not so bad. It was not that difficult for me, because I had already eliminated so many things from my diet --things that made me not feel good. But I also look at the diagnosis as a kind of a "gift" because I had a lifelong love of pasta and now I can eat rice pasta and corn pasta, and I have eaten more pasta (both rice and corn) since going gluten free than I had eaten in the 4 or 5 years before being diagnosed. (I am gluten free since January 1, 2012, by the way.)

    So, that is one part of my story of my journey to the diagnosis and to a more gluten-free lifestyle and to feeling so much better.

    There's a lot more --other parts of the story for me, going back at least 33 years and maybe an entire lifetime.

    (I had the colonoscopy because I had reached that age when they recommend having it done -50).

  10. I would like to suggest that maybe you should not drink soda, or anything else, out of aluminum cans. While your problems may well stem from the soda pop ingredients, they might also be connected to that aluminum can.

    Long ago I found that I did not like the flavor of soda pop out of a can, but if it came out of a glass or plastic bottle the flavor seemed better to me.

    The same with symptoms, some symptoms that occur when drinking liquids from a can did not occur when drinking the same brands of liquid from a glass or plastic container.

  11. I was given a prescription of Mometasone Furoate Cream 0.1%. That helped a great deal. After 2 weeks the skin in the affected areas is still pinker than the surrounding skin, but no more itch after the second day's application. I was also advised to take an antihistamine, and have been doing that also.

    I have an appointment with a dermatologist, later in January.

    This started as severe itching on my stomach, above the belly button. Then it switched to the lower legs, not exactly 'symmetrical', but my lower legs are where the red 'rash' appeared and both legs are still very pink, but not itching at all at this time.

    The only medications I take are for asthma, I am not on any kind of cholesterol meds, no thyroid problems at all (ever), no diabetes, the only conditions I am aware of as of this writing are the asthma and the celiac disease.

  12. Okay, I saw the nurse practitioner, but by that time, with legs itching also, it was showing up as a serious rash and it is eczema.... but it had to manifest the rash-like red areas for that to be apparent. at first it was just a mild rash on my belly, but that cleared up as the legs (mostly below the knee on the back of the calf) began to itch.

    The only medications I take are asthma meds. I have no other conditions that require prescription medicine.

    I take a variety of vitamin supplements, all labelled as gluten-free.

    I have an appointment to see a dermatologist in a couple of weeks.

    The nurse practitioner prescribed (a corticosteroid) mometasone furoate cream, which (naturally) has a positively horrifying list of adverse reactions, not to mention ingredients that give me pause.... but I am giving it a try, having applied the second dose (one application a day). My legs still itch, but I have discovered that gently rubbing them makes them feel better for a few minutes at a time.

    But I am trying to not touch the affected area too much.

    I have found all of your replies interesting and somewhat helpful.... thank you all. I will return with more information as the condition changes.

  13. I do have what appears to be a rash. I cannot figure out why though.

    it itches all the time and nothing relieves it. nothing.

    I have tried lotion, scrubbing, baby oil, anti-itch cream,..... nothing changes this at all.

    I have been keeping track of what I eat (and drink), but since I have taken all new

    foods out of the diet there has been no change. I am now going on the assumption

    that the itching is not caused by anything I consume.

    The only thing on my mind is shingles. I did have chicken pox as a child.

    the only pictures I find of shingles look absolutely ghastly and nothing like what

    my skin looks like right now.

    I am wearing a t-shirt and I scratch the shirt -NOT the bare skin. However, scratch

    or not it just itches all the time!!

    I see a nurse practitioner on Wednesday. not soon enough for me!

  14. I could 'buy' allergic to the cold, but I don't believe that to be my problem. Although wearing more layers of clothing to keep warm enough may have a little to do with this, in my opinion.

    As for allergic to water --lord only knows what may be in the water!! any place and every place. Where I live the water that comes out of the faucets has been through the water "treatment" processing plant of the community and it sometimes smells like chlorine to me.... so

    allergic to water can open a huge "can of worms".

    I do not take (or need) thyroid medication, and I don't think this itching is caused by iodine.

    As of this morning I would say that I do now have what may be a rash. It is still tough to even know if it is a rash because I have been rubbing the itching area (a lot) rather than scratching it. It is still driving me to distraction.

    I do appreciate the input folks. Any other ideas?

    I know of 2 things that I have eaten since Tuesday that are things I have not eaten in a long time....

    One is fudge, I ate some chocolate fudge on Wednesday.

    The other is beans,... kidney beans and black beans, which are in some chili I made, along with a can of Rotel mild.

    So, I am aware that one of these, very likely the beans :(may be the cause of the itching -- I ate some chili on

    Wednesday evening and had it for lunch on Thursday. I am now avoiding eating the chili --and it's wait and see from here....

    I have an appointment with the nurse practioner at my doctor's office, but not until next Wednesday.....

    So, yes, wait and see...what happens with the itching in the meanwhile.... and also paying close attention to any

    other symptoms that may crop up or get worse. (I can still go to a walk-in clinic...)

  15. One of the main reasons I was not that surprised when I was diagnosed (via biopsy) with Celiac Disease is that one of my worst symptoms was itchy skin. This was primarily in the winter, and there is never any sign of a skin ailment, other than the marks I leave from scratching that burning, itchy skin.

    No dry skin --believe me, I have tried lotions and ointments and antihistamines....

    There is absolutely no sign of any skin rash or blisters or anything!! But I itch and it feels like it's on fire.

    This is happening right now and has been going on for 48 hours at this point.

    I do not know whether to call the gastroenterologist or the regular physician.

    It's driving me crazy! Is this part of the celiac disease?

    Have I been gluten-ed and not realized it?

  16. One day I will introduce myself with my story but am really finding concentrating difficult and my head is so sore and every time I move my head the room and everything spins... this dizziness is how I finally found what's wrong with me.

    I have had severe weakness over the last few months (neuro symptoms for years before but the past few months have felt like I'm dying)...

    Anyway i guess what I'd like to know is can celiac really make me feel this weak and this dizzy... I am too stiff to walk far and very scared!

    I haven't eaten gluten for this is my 3rd day and now I have cut cheese and dairy and eggs out as I feel a reaction :(

    I am hoping I can make the doctor tomorrow... What tests should I ask for?

    I wish doctors had thought this might be the trouble before - now I feel I am allergic to everything!! What do I eat?.... Am cutting out gluten, dairy, eggs & corn...

    Just don't know what to eat and am too weak to go to the shops :(

    This is a living nightmare!

    Thanks xxxxxxxxx

    Keep coming back here, to the Forum! You will find that the folks here are very supportive and more than willing to answer your questions.

    Don't be scared!! Try to be positive -- you can get better, especially now that you know to try dietary modifications. It is scary to wonder what you are going to eat to survive, but there are alternatives, and some of them are more delicious than the foods you can no longer have.

    I will be thinking good thoughts for you Cazzzzzy!

  17. age is just a number, and I'm not a number..... but I'll throw this out there: 52.

    I was diagnosed in November 2011, but I have had sypmtoms of celiac disease since I was a teenager.

    Thank you to all the folks here at the celiac.com forum with all their information, stories, and advice!!

  18. I have been gluten free since January 1, 2012 and I did not start losing weight until just last week. I know that I was overcompensating at first and eating larger meals. I have gotten to the point where I do not eat unless my stomach growls and that has finally started a nice, slow weight loss in the past week about 3 lbs. came off. I hope it continues as I am in the 'obese' category according to the Mass Body Index on another website. I need to lose 40-50 lbs, but will be happy to lose 15 or 20 lbs, as then I can fit into most of the clothes in my closet.

    I was never so ill that I lost weight, although I now believe that I have had celiac disease for many years. I am greatful that I was never that sick and I am sympathetic to any who have been terribly ill. I am told that I have 'mild' celiac disease, and that the villi in my intestines are not badly damaged right now.

    Anyway, dmcook1990, what I think is that your body needs some time to adjust to the gluten free diet, and it may take weeks or even months before you start to lose weight. Everybody is different, everyone's body is different, and everyone's body reacts differently in some way to any change in lifestyle.

  19. I guess this is a two-part question:

    1. Once you figured out gluten was the problem and you'd had some time to look back, did you find yourself remembering symptoms and reactions from long, long ago, and suspect you'd had a gluten issue for far longer than you'd originally thought?


    2. Did you notice that perhaps you unconsciously preferred a lower-gluten diet (just weren't that "into" wheat-based carbs), as if your body was trying to protect you with a natural disinterest or aversion?

    Just curious. I'm looking back and realizing there were subtle clues...

    1. OMG YES!! Actually, I have had gluten intolerance and/or celiac disease for over 30 years BEFORE being diagnosed at all. (by endoscopy and colonoscopy). My symptoms seemed widely varied and unrelated to each other. If I complained of fatigue I was told "everyone is tired", my gastro-intestinal symptoms were "irritable bowel syndrome" --I was to take Mylanta daily, and worst of all the itching that did not include a rash, breakout, or any visible signs was 'all in my head'. (and many many other symptoms, which apparently are attributed to celiac disease according to the helpful folks here at the celiac.com forum).

    Going gluten free relieved the itching! That was the first and biggest, most noticable relief of any symptom and my main motivation for staying gluten free --no more horrible, burning itchy skin!

    2. Yes again. I had lost interest in pasta almost entirely. I was no longer interested in pizza at all. It should be noted that I had not purchased bread in about 18 years, which does track back to a time of bad intestinal symptoms that led to some dietary changes. The real problem I had, pre-diagnosis, was that when I did have bread served to me at a restaurant or at someone else's house, I could not get enough bread and ate far too much, then felt ill later. But I did not make that connection at that time.

    I would say that being diagnosed with celiac AND coming to this forum were huge revelations to me.

    At the same time, when I was told of my diagnosis with celiac disease I was not really that surprised.

    About 2 years before diagnosis I had experimented with cutting 'wheat' from my diet to relieve that itching skin.

    As for subtle clues, I am really annoyed that no doctor in over 30 years even tried to figure out if any of my symptoms were connected in any way, or what they might mean. I was left to wander the Internet, reading medical websites, searching, always searching for some kind of answer. (I was not too far off, shortly before my diagnosis I had started researching Sjogrens Syndrome, which is not that different, just has some different symptoms.)

    Also, I would tell you that I decided, on my own, to have a colonoscopy, as it is recommended for folks near my age. Also, I have had too many folks I know and love in treatment for various types of cancer --and at least colon cancer can be detected and cured if you are tested early enough. So, really my diagnosis was more or less accidental and would not have come about if I had not made this decision myself.

    I would only add that I was never gravely ill, never hospitalized for any of my celiac symptoms. For that I am very thankful and I feel extremely sympathetic to those who have suffered severe illness and/or been hospitalized due to the celiac disease.

  20. I think I got glutened today, by driving on a highway where they have been mowing in the right of way and median 'grasses' recently and still are today. (who knows what grows wild out here in Wisconsin!) About 45 minutes to an hour later I suddenly had some old, familiar intestinal symptoms.

    I cannot figure out what else could have caused my body to react this way. I tracked back for 48 hours and cannot think of anything I consumed that has ever made me sick before.

    My intestines started gurgling and I thought I was going to have diarrhea, and then I had intestinal cramping. All this while driving a truck... so it was not as bad as it could have been, obviously, as I did not have to pull over. I did make it to a rest area, where I used the facilities and then took some immodium, because what else could I do? It's a 90+ degree (farenheit) day and I had a few more miles to travel before I could stop.

    I was able to continue to sip water to stay hydrated and by the end of my drive, about another hour, I was feeling much better.

    But those symptoms --I had not experienced anything like that in a while, so it was scary and a bit of a shock!