Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Self-diagnosis And Being Taken Seriously
0

15 posts in this topic

Hello all!

I'm new to the board, and hope that this topic hasn't already been covered ad nauseum.

Seven months ago, I was fortunate enough to discover that I have Celiac disease. It has been a problem my whole life (age 47), and the signs were abundant, yet no doctor (or dentist, I might add) was able to figure it out. I don't mean to blame them, entirely, because only we know the extent of our own body's individual symptoms and quirks. Yet, since my big discovery, I find that there is an amazing degree of ignorance in the medical community...at least in the USA. Anyway, everything pointed toward Celiac for me...Scottish heritage, short and skinny as a kid, very late menstruation, tooth enamel defects, muscle and bone pain, depression, bloating and stomach aches for no apparent reason. In fact, the stomach aches were bad and frequent enough that I was x-rayed at age 11, and nothing was found; no help for me. I figured out while in my thirties that I was allergic to casein, but it was another 12 years (!) before the rest of the health puzzle came together. Thank goodness for all the excellent posts on the intenet! I did all my research there, and am so grateful for the help. Something that I saw many times over was the admonition not to switch to a gluten free diet until getting a diagnosis. Well, this is easier (and cheaper) said than done. Actually, before I noticed that bit of advice, I had already made the switch, with near miraculous results in only two weeks. Then the insecurity started to hit me. I felt that maybe I could only know "for sure" if a doctor told me so. It seemed logical that that there would still be plenty of gluten in my system early on, and that a test might show positive at that point. So, I called our local doctors' offices, all three of them, and in each case, nobody had ever heard of Celiac Disease. I figured, fine; let's cut to the chase and go right to the gastroenterologist.

But when I called them, they told me that they would not take a patient without a referral! So our medical community, at least in my case, has been of no help whatsoever. Better, I thought, to just stay with what works, the diet, and forget the so-called "official diagnosis." I would be hard pressed to afford one anyway. Well now I find that when calling companies about the gluten status of their products, one question often comes up, which is if I have been diagnosed by a doctor. Am I the only one who feels as if the self-diagnosed are not being taken seriously? It really worries me. Why must we be made to jump through the consecrated hoops of the medical establishment?

0

Share this post


Link to post
Share on other sites


Ads by Google:
So, I called our local doctors' offices, all three of them, and in each case, nobody had ever heard of Celiac Disease.

That is really sad..... <_<

Well now I find that when calling companies about the gluten status of their products, one question often comes up, which is if I have been diagnosed by a doctor

I think that if you feel better without gluten you should stay gluten free. Just tell people that when you eat gluten you get very sick. That's your business not theirs.

0

Share this post


Link to post
Share on other sites

Tell the nosey companies that your money can be quite easily spent on products from other companies that don't ask such impertinent questions.

0

Share this post


Link to post
Share on other sites

Wow that is very rude of companies to even ask that. I have never had someone ask that but if they did I would tell them exactly what kvogt said....you can easily buy products from other companies.

That is very sad that 3 offices have never heard of celiac. I wonder how many misdiagnosed celiacs have walked out of those buildings.

0

Share this post


Link to post
Share on other sites

Possibly the person on the other end of the phone just was wanting to know more about celiac disease and didn't mean it as an insult to you. I seriously doubt that the question is something they are required to ask!! ha They were probably just curious as to how you get a diagnosis for it. It could have been your opportunity to educate them about Celiac. ;) Next time, take the challenge and educate!!

-Jessica :rolleyes:

0

Share this post


Link to post
Share on other sites




Thanks, everyone, for your comments and good advice! True, it is perhaps not necessary to put a label on my illness. I like the idea of simply stating that gluten products make me very sick, so I can not eat them. I do have to wonder what would happen, if, for instance, a self-diagnosed Celiac had to go to the hospital and rely on the diet provided there. Would they honor a request for a gluten free menu if the doctor's "official" Celiac diagnosis were not part of the picture? See what I mean? It seems that problems could arise. As for medical ignorance, it amazes me that many doctors don't know of the condition, yet a surprising number of people on the street are aware of it. And how about food manufacturers? Our medical community really is not focused on helping people to help themselves. Maybe this sounds cynical, but I do feel that if there is no pill that can be prescribed for a malady, then many doctors can not be bothered to learn about it. I think, in their view, we are supposed to hand over the care of our own bodies to them, yet, coping with Celiac disease is entirely up to the individual. So it doesn't fit the culture. Actually, I do educate people whenever the opportunity presents itself. Folks are generally receptive, but as in the case of the food companies that wanted to know if I had a doctor's diagnosis, it felt more like they didn't want to be troubled to provide the information I requested if I couldn't validate my claim to being a Celiac. That's why it's a concern. With any luck, in the future, product labeling will eliminate the need to go through this drill. Thanks again, for your kind help. Talk to you again, sometime!

0

Share this post


Link to post
Share on other sites

well lotusgem---i dont have a doctor diagnosis and i dont need one--anyone that knows me knows i cannot have gluten---if i was in the hospital, there is no way they could make me eat gluten--besides my celiac sister would have their heads--i dont need a piece of paper saying anything--i went years without a diagnosis--i was told so many things and never any relief---gluten free is the way i will always be--plain and simple--------deb

0

Share this post


Link to post
Share on other sites

Thanks, Deb, for the shot in the arm. As far as I'm concerned, I've got Celiac disease and wild horses couldn't get me to KNOWINGLY consume gluten-laden food. My concern is that people might not respect our needs without a bonafide Celiac pedigree. We are, in essence, asking others to go to special pains in order to fulfill a request for gluten free foods, if we are in a situation where we can't provide for ourselves. A person could say to themselves, "What they don't know can't hurt them," and take the easier course by serving gluten-tainted food. That's what I'm talking about. It's not that I don't basically trust people, because I do, but people can be lax if they do not sense genuine need. The greater issue overall, though, is that help seems less readily available to those of us that have not gone through the sanctioned channels.

0

Share this post


Link to post
Share on other sites

I am also an example of self-diagnosis. I WAS in the hospital over a year ago for surgery, and just told them I had celiac disease. No questions were asked... no explanation given. My OB/GYN didn't ask WHO diagnosed me... she just wrote in my chart that I was celiac disease and could not have gluten. She checked all my meds, etc. Was awesome about the whole thing. Of course, the staff at the hospital were clueless about serving me gluten free meals. I hardly ate due to not being hungry after a hysterectomy, but if I HAD been hungry, I would have starved! They asked me if I wanted soup, crackers, etc. HELLO??? Ha! Sigh... WE have a long way to go to make celiac disease known out there. :blink:

0

Share this post


Link to post
Share on other sites

This is completely fascinating because I am in the process of trying to get a medical diagnosis...I know I feel better on a near-gluten-free diet, and I'll continue to eat this way regardless of whether I have an official diagnosis. However, if I have celiac disease, I know that 100% dietary compliance is critical because of all the damage to the small intestine and resulting malabsorption of nutrients and what that can lead to...not to mention the increased risk of cancer. So far, I have never had any vitamin or mineral deficiencies and have never been anemic.

So...if I have the diagnosis, I will get totally serious about following the gluten-free diet. If I don't have celiac disease, I will probably do less than my utmost because I won't be worried about damage...just some possible discomfort.

Here is my major question: are there gluten-related conditions other than celiac disease? or if you have 'problems with gluten' are you definitely suffering from celiac disease?

This forum is a real gift; there are so few sources of practical or reliable information to turn to.

Thanks to everyone for sharing their experience!!

0

Share this post


Link to post
Share on other sites
Here is my major question: are there gluten-related conditions other than celiac disease? or if you have 'problems with gluten' are you definitely suffering from celiac disease?

There is Dermatitis Herpetiformis which is a horrible rash that develops on the skin when gluten is injested. This is related to celiac disease and most people with DH have intestinal damage as well.

You can also have gluten intolerance or wheat allergy and not have celiac disease.

I don't think there are any others though

0

Share this post


Link to post
Share on other sites

Hi again. Nebraska dweller, I feel reassured by your comments about whether or not you get respect as a self-diagnosed Celiac. Then again, I feel disappointed but not surprised about the,as yet, unenlightened staff at the hospital trying to make you well with gluten-filled foods! Tell me; Nebraska is wheat country, isn't it? I live in rural Idaho and a fair amount of wheat is grown here. Even as I write, there are wheat-berries all over our street from the farm trucks taking them to the flour mill. It makes me uncomfortable just knowing it's there. Do you have any problems associated with wheat farming in your area? Or maybe you live in the big city....

0

Share this post


Link to post
Share on other sites

I am another self diagnosed sufferer. None of the many doctors I went to were of any help so I had no other option. All I know is that if I eat gluten I feel like crap. Don't eat gluten and I feel fine. That is really all I need to know.

Ianm

0

Share this post


Link to post
Share on other sites

Dear Ianm,

you sound just like me in that doctors let you down and you made your own health decision based on your personal observations (and you are comfortable with that.) I can identify completely with your choice of words,"no other option" in describing your situation! None of the doctors in my town had ever even heard of Celiac disease. When I was talking over the phone with a nurse at one of the offices, she actually chided me for having not been in to see the doctor in over 2 years, like I'd been a bad girl, and they therefore perhaps wouldn't feel entirely inlined to help me. I said, "Gee, lucky me...I had no reason to have to go to a doctor!" She didn't seem to think it was very funny. No, I've never been much of a worshiper of doctors, so it is somehow fitting that I should have a disease that I diagnosed myself and can only be treated by myself. Thanks for writing, and stay well. :)

0

Share this post


Link to post
Share on other sites
I do have to wonder what would happen, if, for instance, a self-diagnosed Celiac had to go to the hospital and rely on the diet provided there. Would they honor a request for a gluten free menu if the doctor's "official" Celiac diagnosis were not part of the picture?

lotusgem,

I am technically a self-diagnosed celiac. I do have a diagnosis from Enterolab, but since that is not yet accepted throughout the medical field, I consider my self to be self-diagnosed. Anyhow, I wanted to share my experience. I recently had surgery that required a hospital stay. Needless to say, I was worried about the food situation. The surgery was not something that would require me to be on a restricted diet, so once I was awake and feeling up to it then I could eat. I tried to make arrangements with the hospital before hand, but they assured me that notifying my pre-surgery nurse when I got to the hospital would be sufficient. This made me nervous. Anyhow, long story short. I was able to get the gluten-free diet, and they did not contaminate me at all. They didn't ask for proof of a diagnosis. They took down all my "allergies" when I got there, which included all the medications, foods, and even the adhesive tape that bothers my skin! And they never messed up, except I did have to remind them about the tape every time they came in to draw blood. The only problem I had was late at night when I couldn't sleep because I was so hungry and had a spliting headache (probably from no food!), and all they could bring me that was gluten-free was these funky little Kosy Shack gelatin bowls that actually say gluten free on the label, but taste weird and have a texture like slime. I was thankful then that I had brought a bag of gluten-free snacks from home. But rice protein bars and fruit leather can only fill you up temporarily! So at least from my experience the hospital stay was not bad, and the lack of an official diagnosis wasn't an issue. I can also tell you that the only doctors we have found who would not accept the Enterolab diagnosis were the GI specialists (both regular and pediatric). All the other doctors have been very accepting of it, and it probably helps that they can see how much our health has improved on the diet.

On another note, I wanted to share this little tidbit. Today at church a friend say my daughter (she is almost 6) and commented on how tall she was getting. She looked at me (I'm 5 ft 2in) and asked where in the world did the tall gene come from! I said, probably from my dad who is 6 ft. Then I proceded to tell her a little about celiac disease and how the intestinal damage and corresponding malnutrition can stunt your growth, and since I wasn't diagnosed until I was 30 it was too late for me, but all my children have just been growing like weeds since they went on the diet a year ago! She was so happy that we knew what was wrong with us and that it wouldn't affect the kids growing bodies. She doesn't EVEN know how happy I am! I wish someone had figured it out when I kept going to the doctor for health problems when I was a kid. I am just really glad that my kids won't have to suffer for 30 years!!

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,544
  • Topics

  • Posts

    • 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. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined