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Top Five Reasons To Get A New Doctor
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184 posts in this topic

When your Heart Dr say's it not a big deal it just causes a little more diareah than usual I started to give a lesson on Celiac but he did't have time so I never went back to him. I thought he might think a heart that wasnt beating right would't be any thing to worry about.

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i tell ya where do some of those doctors get there licance from? a cracker jack box lol

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Yeah where do you find a G.I. doctor in toronto ontario. who doesn't look at you like its all in your head. Before I got diagnosed last yr, I had gone to the emerg three times before that with chest pains and stomach pains, on the third time they admitted me for six days, and a week later the G.I. who did the scope, called to tell me that I might have celiac disease, but would be confirmed by getting a blood test done, well on my last visit almost a week ago, he said well sort of there is nothing more for him to do, see you in yr. what no more with him perhaps its time to find another one who knows more about this disease. ok bye from leewendy

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My GI told me to eat wheat toast with some butter on it before my fat absorpsion test (keep in mind he'd diagnosed my celiac the year before). I gave him a funny look, he repeated himself, again emphasizing WHEAT. Then he suggested maybe some whole wheat pasta if I wasn't into toast....

needless to say when I move next month I'm going to find a GI who knows something (ANYTHING!) about celiac around Phoenix!

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How about this one

I the midst of major allergic reaction to Synthroid (BP is 188/92, resting pulse is 110 normally 68) Full edema and massive hives.

Phone conversation with Nurse Practioner:

Her: "You have Hives?"

Me: "Yes, Hives H-I-V-E-S, you know Uticaria? Allergic Reaction?

Her: "Well, that's just dry skin"

Me: No, it started the day after I started the Synthroid and has gotten progessively worse"

Her: "Well, it could be an allergic reaction, but that is very rare"

Me: "So I guess that means it can't be true!"

I scheduled an appointment with the doctor who took one look at my vitals and said "I don't like you on this medicine, we have to get you off, Now!"

I will not go back to said nurse pract. again., but I love the Dr.

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First he told me I had lactose Intolerance, which he had, too. Funny, going off dairy made me L.Intol. Since then, I've gotten back on it.

Then he said my back pain was from slouching and to do more situps (I was aerobics queen as it was)...plus then I'd look at my fat, slouching husband and wonder how his back didn't hurt...????

I begged for the bloodtest and the Dr. INSISTED that I go gluten free to see a dietary response and then if I felt better he'd do the blood test.

When my IgA or whatever levels were "elevated but not enough to diagnose". I said, "What do I do?" He said, keep on a gluten free diet!

btw

Every time I went in he'd say "I think I have that, too". I think they teach them to say that to show compassion. But I can tell it's BS. When he sent in my bloodwork he sent his own in to test his levels, supposedly. what a dork.

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My doctors have some gems:

- We found what is causing you the pain! It's an ovarian cyst! (But my pain is 8 inches above my ovary!)

- It's just stress induced constipation. Take stool softeners every day and you'll be fine. Some people just get constipated (I hadn't had a bowel movement in 2 1/2 weeks and the xray showed poop throughout my intestines)

- Just keep taking the stool softeners (when I told them that eating pasta and bread made me sick and how miserable I was traveling in Paris and Italy-- how much obvious can it be!! The big problems always started during the last weeks of school where I was eating pizza and drinking beer and I was joking about how I had C going into D after my pasta binge! AND I HAVE A FAMILY HISTORY (In my defense, I didn't know what Celiac meant)!!)

- You have no antibodies, so it isn't gluten (1. no one in my family has antibodies. 2. He told me 4 months before the test they told me that "if it makes you sick, don't eat it", so I had not had anything with obvious wheat in it. 3. I had a wonderful dietary response in the week between when my blood was drawn and when I got it back)

Grrr-- Doctors are not my favorite people. I understand why the med school machine causes this, but I hate how clueless some are.

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When my oldest DD was 2yrs. we took here in to the gi dr. and ran some tests. because of stomic pain. I thought her reflux was flaring up again. She was born with a alsuer also. My mom went and took her to her follow up appt. and the gi clinic scured up her referal and did not let her be seen with the doc. I was 7 mths pregnent with my middle DD and dicided not to have a fight to get her in again. Takes at lest 3 mths to be seen at this ped gi. I Thought they would have called if anything was wrong with any of the testing. Fast forward five years and Emily was getting worse again. Got a pointment with the same gi doc. She came in and ask if Emily had ever been seen by her and I said yes when she was 2. "did I do testing on her?" Yes I said. She went out and was back with in 10 mins and said that she tested positive for celiacs and we need to retest her. I was so ticked off I could have spit nails. Thats when I gave up on DR.s and dont trust them at all. Well Emily's test came back even more positive then before and we set up a biopies, biopy day and I asked the dr to get at least 10 biopies of the small intestince and she look at me like I was crazy and she said one will do just fine. ha ha ha. biopy came back neg. wonder why. Then the doc said that Emily can eat gluten because she did not have the damige to her villa. I told her she had no qlue of what she was doing and a positive blood work means that you have problems with gluten and I am going to put her on a gluten free diet. The doc was so shocked and said I could do it but she dought that it would help her much. It has been almost a year and Emily has not have the poblems she had and now is in her weight group for the first time in her life. Yea it did not help her out. lol. Now my sisters kids are going to see her now and I told her just get the blood work done and be done with that doc. There are only 3 ped gi docs in okc and they are all in the same office. sucks.

Jodele

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When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

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When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

I would formally and in writing fire this doctor. I would be very specific about your treatment by her and I would also send copies of the letter to the head of whatever medical group or hospital she is affilated with. Make sure you get full copies of ALL your records from her ASAP (you have a legal right to them and don't let them try to tell you that you don't, you may have to pay a copy charge, and let your new doctor know what happened.

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When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

Boy she sounds like a "gem."

One GI told my husband he has an obsession with food and needs psychological help....(this was prior to celiac diagnosis, and we're still struggling with IBS issues and noticing that certain foods bothered him - foods like fruits/vegetables/spices -not gluten but it certainly foreshadowed an intolerance that the GI should have picked up on).

And here's a good one:

Your GP gets angry because your ob/gyn specialists notices that you have a lump in your thyroid and gives you a "script" to get a blood test so that it's done before you go to your GP (to save time, etc.). The GP comes down with "professional envy" and then decides not to allow you to get a nuclear scan of the thyroid just now ( to see if the growth is a hot or cold nodule (cancer). At this point, you fire the GP.

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When the doctor tells you that you have Celiac Disease then his next sentence is....It's ok though to still eat whatever you want. If you get sick it doesn't matter just don't eat for a little bit and you'll be o.k. What sad, is b/c he was my doctor and I had never hear the word gluten before that visit, I continuted eating "whatever" for the next 5 years.

Think I need a new doctor!?!...... :-)

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My doctor today said "I don't think that I can help you."

I said "Then there is no reason to be here."

And I walked out.

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Luckily I don't need a new doctor because my GP and GI both told me that I was "fine" after not listening to a word that I said. I was so "fine" that they refused to run any tests or even do a thorough exam. I guess that means I'm okay, right? Well, aside from the pain, bloating, gas, loss of coordination, etc.

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Or when the doctor directs you to the internet for information.

That really was good advise, as this is where I met all of you wonderful people.

Cathy

I was also sent to the internet for information... had no idea what to eat those first few days. Got a great start here at celiac .com :)

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When a top children's hospital in Texas misdiagnoses you for 3 years with Lupus and insist that the meds. help you when they dont. So then your frustrated mom spends countless hours looking up your symptoms just so the doctor can tell her that I dont have enough of the "commom" symptoms for Celiac. I guess telling them "eating one Goldfish cracker makes me have D." wasnt enough evidence to show that I cant have gluten!!

It took my primary care doctor to diagnose me, when he thought he was doing the right thing sending me to the specialist.

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Doctor #1- An internist. I'm 45 and the doc is a woman a bit older. I go in complaining of bloating and "bathroom" problems, with several symptoms of ovarian cancer and wondering why I feel so bad. She poo-poos me but pokes me and does a blood test for ovarian cancer, which is negative. Tells me I'm just overweight (I am, by about 25 pounds) and to go away. Of course, if she had really cared, she might have asked me my other symptoms and diagnosed celiac. A year later I got really sick and had stomach pain, so she did refer me for an endoscopy for an ulcer. That was the only good thing she did.

Doctor #2 - A GI specialist set up to do my biopsy. He was great because he didn't see any evidence of celiac (and wasn't told to look) but he took small intestine samples. No blunting villi BUT there was cellular evidence of an immune response, so he said to eliminate wheat & gluten. Sent me to a dietician. On the followup where I told him how much better I felt and how quickly, he diagnosed celiac. HOWEVER, he told me that since I had a "mild" case, I didn't have to be as careful with CC and could occasionally cheat. So, in the end, a dud.

Doctor #3 - Another internist, a woman in her 30s. I wanted a better doctor, so I went to her on a recommendation from a family member. I told her I felt better after the celiac diagnosis/gluten elimination but still crummy and, based on symptoms and research, I wanted to be tested for autoimmune thyroid problems. She refused, saying that I had no symptoms and all I needed was my TSH tested and I argued with her. She snarkily commented that "not everything you read on the internet is correct" and I argued back that what I read is PubMed, and I also am an intelligent person and expect to be treated correctly and with dignity. I fired her and am seeing a naturopath next week.

Doctor #4 - My long-time OB/GYN who also had the opportunity to diagnose me based on sypmtoms 2-5 years ago. Yesterday when I saw her, she was interested in the celiac and asked what my sypmtoms had been. I told her and stated that that was why I was worried about ovarian cancer and there is some overlap in the symptoms. She sarcastically said, "EVERYONE is worried about ovarian cancer!" HELLO of course we are when CNN or some other media says "IF you have bloating, gas etc. etc. ask your doctor to ckeck for ovarian cancer". And some women do have it. Why she was so defensive I don't know, except maybe because I pointed out that there were symptoms of celiac over 4 years ago. I didn't blame her explicitly but... there you go.

Doctor #5 - My son's Pediatric GI. Talking about my diagnosis, he tells me that without total villious blunting, many doctors would have said that I don't have celiac. Yeah, and since I went off gluten in February, who's to say that by now or next year I wouldn't have been even more sick and by then I would have shown totally "gone" villi due to more gluten damage? Do they really expect someone to have to get so sick before they diagnose? The one good thing that he told me is that even though the insurance company won't pay for my son's gene test until all other test options (i.e. EGD) have been exhausted that I should get MY gene test done and paid for by insurance to see if I "really" have celiac. So I will, but even if I don't have the gene, I would never go back on gluten. But it's a good idea and will help me help my son, even if the doctors won't.

You know the most frustrating thing is that without all you guys, I would feel so alone. The docs make me feel abandoned and unsupported, which is not a good thing - I'm sure you'll all agree - when you're faced with serious illness. I'm happy that I don't have cancer or diabetes but those diseases at least get you some concern from doctors.

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The nurse repeatedly says to the phsycian, "Oh, my she's so skinny. Can you believe how skinny she is?"

(I'm almost in tears.)

The physician replies, "She's fine."

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"The diet is expensive."

(I'd like to go back and tell the physician I'm not eating Immodium AD like candy, so I'm saving a lot of money.)

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I read all these and have heard 90% of them from my doctors that I have seen.

When I finally got my diagnosis I saw a dietitian who said she had heard of celiac disease and gave me the Whole Foods list of Gluten Free Products from SPRING 2001! It was only one page long at that point!

Um, I had already picked up the zillion page list updated May 2007!

I called my advisor and changed my major to Nutrition Sciences and I want to become a RD with a specialty in Celiac Disease and other food intolerances.

Haven't found a good doctor yet, even my allergist who diagnosed me and has Celiac himself just said "It's a meat and potatoes diet, eat meat and potatoes."

When I got my enterolab results he diagnosed me over the phone through his nurse, and told me that they didn't do follow ups for celiac disease. I was thinking, you have it yourself, you should know how hard this is for me.

UGH.

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My first post after registering is a rant about my frustration with my doc over in the false negatives thread, so I won't repeat it here.

My golly, these docs we're writing about all use the same lines! "I don't believe in..." "Here, take a pill, to sleep better..." My max out was that despite 1) reporting a ton of symptoms for 2 years and 2) then reporting massive improvement when I quit eating wheat, my doc kept doing a lupus test on me, because I do my own yard work & am in the sun, so have an age spot on the bridge of my nose. I'd say, I can't sleep, I'm ravenous, I can't think, I hurt and he would look at that 1/3" age spot on the bridge of my nose and order yet one more lupus test, which never came back positive, ever.

So: he refused to hear me, and chose to focus on a spot. :) I got one of those microdermabrasion kits at Walmart and microdermed the spot off. B)

Off topic, but the wackiest thing I've ever been told by a board certified physician is that a lump under my arm was an air bubble.

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How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!

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All i can say is WOW!!! i'm reading these posts and relating so much, i went in to my family dr. last summer with a rash (2006) i was told i picked something up from camping, went back in 3 weeks later as the rash didn't go away, i was told my husband must be giving me something from his work, got more predisone, was back in 3 weeks with the rash still...i was told then, it's something from camping again, got a cream that didn't really work. I went to see my ob/gyn, told twice by her she didn't no what it was, but treated me for a yeast infection..then i put up with the rash for another few months. I go back into my family dr. this July, still with rash, aching legs, feet, head fog real bad, dizzy, nauseated, was told i have vertigo and put on an antibiotic which didn't do a darn thing but make my D worse. I go back in 2 weeks later still with all the symptoms, was told, its a virus. SOOOOO i take it upon myself to see a dermatologist, was put on dapsone for 3 weeks, return visit was told its DH. was put on a gluten-free diet and more dapsone and my rash is almost gone and i feel soo much better.

OHHH and when i told my family dr. it was DH, he said hmmmmm i'm curious to see if thats what you really have, he said he doubted it, as i would be sicker than i was! I said ummmm i've been really sick for a long time, he said no you would be sicker than that..oh my, how much sicker can you get is what i thought. but this thread made me giggle, going to see a gastro dr. on Oct.15th, can't wait for that one :P

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I just had lunch with a group that included a pediatrician who told me that his step-mom has Celiac, then proceeded to tell me about all the great spelt bread I could get...

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This is the scariest thread I've ever read

My baby had rectal prolapse. Our family doctor wanted to just arrange a surgery, without even trying to find out why he was having that problem! I had looked online, and found that Toby had all the symptoms of cystic fibrosis. I insisted on an appt. with a ped. gastro. at our local children's hospital.

Toby was tested for cystic fibrosis, twice. He doesn't have it. The ped. gastro. consulted with the pulmonologist, and between them they decided it was asthma + celiac disease.

During that same time period, my 8 year old was suffering from horrible constipation and acid reflux. We took him to the family doctor, who wasn't in that day so we saw his partner. Thankfully the other doctor has celiac disease himself, and actually knows what he's doing! He sent us to the lab for testing, it showed a slight positive. We had all 4 boys tested, and they had nearly identical results!

We went gluten-free, Toby never had another rectal prolapse, Nate's constipation and reflux were cured (and he started growing again), Jonas's autistic behaviors and learning disabilities disappeared, he now 'only' has ADHD, and Henry's lifelong potbelly is gone.

I had friends on a parenting message board who told me to insist on seeing experts, and not quitting until I had real answers with lab results to back it up. They said parents have to fight for proper care. I'm glad I got that good advice.

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    • 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)  
    • 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. 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???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
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