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This Place Is Wonderful
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Started by glen4cindy,

7 posts in this topic

Posted

I just wanted to take a moment and say how much I really appreciate everyone's time in this forum. I would not have a clue how to live, how to cope, even recognize my problem if it were not for people like you. If you are reading this, then the "you" I am talking about is you. Look in the mirror if there is any confustion. :)

It has been wonderful to find this place. I was beginning to wonder if I was ill with some sort of horrible cancer that the doctors couldn't find, or some such other disasterous disease. My wife was to the point of forcing me to go to the Dr. because she was frustrated and worried at the same time with me being "sick" like 90% of the time. It got to the point that I was trying to find out some way to avoid food. If I didn't eat, I could not get sick from something I ate. The only problem with that solution is that I really don't want to die from starvation. At the same time, I didn't know what to eat because there was not rhyme nor reason to what would make me sick. It became so incredibly frustrating. I didn't want to go anywhere at all for the fear that I would be too far from a toilet. Sorry if that statement is too blunt, but, it is true.

Just finding this place has been a real Godsend. It is like, WOW! I know why I am sick!! I am not some mental case, or some hypocrondriac (sp?) or some kind of crazy knucklehead! I knew that SOMETHING was making me sick. I cannot even describe how frustrating it has been fighting with this THING that I never knew anything about. In the beginning of finding out just what was wrong with me, the Dr. never mentioned Celiac. I am not sure that it is Celiac, may be wheat gluten intolerance. I am going to order the tests from EnteroLab to find out for sure. It was really hard to convey to people around me how sick I was. Some I know thought I was just a baby. 'Get over it' is what I imagined they were saying. 'Get away from me, act like a MAN,' All of those things went thru my mind. I didn't want to go anywhere and do anything with the guys from Church or anything because I always had to worry about being sick, and running to the bathroom 50 million times an hour.

One final thing, I had it in my mind that Celiac was more of a woman's disease. I don't mean any putdown whatsoever by saying that, so please don't take it that way. I have suffered massive headaches my entire life. Some of my earliest memories from being 5, 6, 9, etc. are MASSIVE headaches that I now know are migraines. Most reasearch shows that more women suffer migraine headaches than men do. It is really a pleasure to see men here, from teenagers to how ever old they are. Because now I can see that this is not a womans ailment. You see all the TV commercials about Zelnorm, IBS with constipation, only the Zelnorm is only for women.

Thanks again for this forum. Sorry if I have droned on and on, it has just been great to find this place!

Glen

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Posted

hypocrondriac (sp?)

Hypochondriac.......close....just the "h"...I wouldn't have said anything, but I had that as a spelling word in fifth grade...only two years ago, or 2 and a half, so I still remember...lol. :P

Whenever I see those Zelnorm ads, I always think about celiac disease....since it's always misdiagnosed as IBS, etc. In addition, I don't take your comment about it seeming more prevalent in women offensively....based upon the migraine symptom, it would seem that way. Thank you for your thank yous :) . I concur...this is a terrific board........ :D:D

-celiac3270

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Posted

Hi Glen! We are glad you found this place too. Scott has done a wonderful thing by creating this website and message board *clapping for Scott*!!!!

I love this board and do not think I would have made it this far without it. THe people here are wonderful, they share and support one another. I know for sure I would not have been dx as early as I was because my GI doc thought it was IBS too but I knew it was something more than that, at one point (after losing 40lbs in 2 motnhs) I thought it could be cancer or something, very scary stuff!!!

Anyway, we are glad you are here and receiving support and information! After all we are all in this together :D !!!

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Posted

Just finding this place has been a real Godsend.
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Posted

:) I also agree with Glen... Thank goodness for this forum. I have shared so much information with my doctor which he is very greatful for.

Glen, I know exactly what you are talking about, can't go anywhere without knowing where a bathroom is, not wanting to eat anything for fear of getting sick. I do believe people were sick and tired or hearing how bad my stomach felt... until that first fateful day when I had a horrible reaction at work, then I think people started to think I wasn't being a baby, and just complaining all the time.

For everyone, Thank You, Thank You, Thank You. I have found so much useful, helpful and encouraging information here, I don't know what I would've done.

Linda :P:P:P

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Posted

Hi Glen,

I know exactly how you feel. I too feel blessed that I have found this site as I now know that there are others out there who are dealing with exactly what I am dealing with and I am not alone. I have read so many posts here that I could swear I was reading about my own life!!!! I have had flare ups that I swear I would not be alive six months from then, sure I was dying of cancer. I eventually live through them and now try to tell myself each time, "Okay Karen, we have gone through this before, this too will pass......" There are also so many people who's health mirrors my own here also, i.e. dealing with Celiac Disease, hypothyroidism, chronic anemia, fatigue, depression, just to name a few! The times when I feel I can't cope anymore (which for me is very difficult, I have four young children, including 3 yr old twins, that need my attention.....), I just have to remember the people here and the support that I receive here, even though I am a newbie, everyone makes you feel welcome here......

I am also learning so much here, it is so informative and helpful advice how to know where the gluten is hidden......

Best wishes,

Karen

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Posted

You're definitely not the only "man" on this board! I had the IBS dx for so many years, I also had to "suck it up" and deal with it. My wife seemed to get so irritated when I was too sick to go somewhere, like I was intentionally ruining her fun by being ill. Never mind that I was not only also missing out on the fun myself, but also writhing in pain. People really have no sympathy at all, do they? Now when my wife gets the least bit sick she expects me to pour on the sympathy and understanding, but I tell you that's hard for me to do. I'm a pretty generous person, but even so, I just want to say, "Now you have a tiny taste of what I have put up with 24/7 for the last 20 years!" It's like the world shuts down when she gets ill, but when I'm sick it's just because I'm trying to mess up her fun. Now that I'm gluten-free, she "tries" to be supportive, but she still complains endlessly about how the gluten-free food tastes, how expensive it is, how I'm still not 100% better yet... <_< I guess it's human nature to not understand what we don't personally experience. Ah, well. Really she's not all bad, that's just my little rant.

I agree that it has been wonderful to find this forum, and I am very grateful for it. Whenever I have had to suffer an affliction of some sort, from Bell's Palsey to Celiac Sprue, it has been an online forum that I've looked for to find the answers that doctors couldn't give me. Rarely have I found one as active, friendly, and helpful as this one.

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Go To Topic Listing Celiac Disease - Coping With

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    • Irene Joanne
      Overwhelmed and unable to accept

      By Irene Joanne · Posted

      You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • GFinDC
      gluten free and awaiting a specialist

      By GFinDC · Posted

      Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • moojoo
      Worcestershire Sauce - Are There Any Gluten-Free Brands?

      By moojoo · Posted

      Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
    • Ennis_TX
      Cravings and Substitutions

      By Ennis_TX · Posted

      I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • egs1707
      Overwhelmed and unable to accept

      By egs1707 · Posted

      After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???

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