Hi Everyone! A Few Questions.

[snicking.around]

Good Evening Ladies and Gents,

 

 

Apologies if this runs long, I'll try to keep it concise. Aside from having known a few people with celiac and research I've done recently, the disease is still pretty foreign to me.

 

I've had a few lifelong ailments and some others that I never considered could have been caused by a single issue, but I recently realized that they point in this direction or at the very least some form of intolerance to a high FODMAP diet.

 

For clarification, these are my symptoms:

 

Lifelong and longterm: Psoriasis, Keratosis Pilaris, dandruff, asthma, and sleeping issues

 

Past five years: Acid reflux (here and there), a random and small itchy rash on the outside of one of my hands that showed up on one hand for a few years (might have been eczema, not totally sure), had a period with a recurring mucocele on the roof of my mouth, back pain (here and there, could just be life), mouth ulcers (happened once, probably strees-induced).

 

Past year or two and past few months: Tonsil stones, chronic sore throat (almost every day for a year, might be related to the tonsil stones), stomach pain and the usual IBSesque symptoms intermittently, starry eyes, blurred vision, mood swings, anxiety, difficulty focusing, memory loss, short temper, brain fog (big time in the past 4-6 months, never had that before). Most of these, especially the behavioral symptoms, have only shown up since probably this Fall.

 

(It should probably also be noted that my dad and one of my brothers also share some of these symptoms, though neither have ever seen a doctor for them.)

 

I have no intention of getting tested anytime soon as I've made it this far (26-year-old male by the way) just dealing with some discomfort. Maybe I'll get checked in the future, but not right now. So here's what I'm wondering:

 

I've read a number of stores about people getting "glutened" and how they fall ill and often remain that way for an extended period. When that happens and your body reacts, are the symptoms more severe than they were when you were regularly consuming gluten? Does your body become accustomed to it and react more violently after it has healed? Have any of you had issues like me in which you've always had certain related problems and then a number pop up out of the blue or at random periods throughout life?

 

Part of why I'm wondering is I've recently cut out gluten (sore throat went away after two days. Two days!) and I'm planning on foolishly consuming some gluten a little further down the road when/if my symptoms subside to see how my body reacts. So I'm trying to figure out if it should feel worse than it has before and if mild or severe reactions indicate whether this is something like celiac or other food intolerances.

 

Sorry if that went long and congrats if you made it to the end. Any insight is greatly appreciated as I'm still a bit lost, overwhelmed, and frustrated by this whole thing.

 

 

 

 

 

[kareng]

Good Evening Ladies and Gents,

Apologies if this runs long, I'll try to keep it concise. Aside from having known a few people with celiac and research I've done recently, the disease is still pretty foreign to me.

I've had a few lifelong ailments and some others that I never considered could have been caused by a single issue, but I recently realized that they point in this direction or at the very least some form of intolerance to a high FODMAP diet.

For clarification, these are my symptoms:

Lifelong and longterm: Psoriasis, Keratosis Pilaris, dandruff, asthma, and sleeping issues

Past five years: Acid reflux (here and there), a random and small itchy rash on the outside of one of my hands that showed up on one hand for a few years (might have been eczema, not totally sure), had a period with a recurring mucocele on the roof of my mouth, back pain (here and there, could just be life), mouth ulcers (happened once, probably strees-induced).

Past year or two and past few months: Tonsil stones, chronic sore throat (almost every day for a year, might be related to the tonsil stones), stomach pain and the usual IBSesque symptoms intermittently, starry eyes, blurred vision, mood swings, anxiety, difficulty focusing, memory loss, short temper, brain fog (big time in the past 4-6 months, never had that before). Most of these, especially the behavioral symptoms, have only shown up since probably this Fall.

(It should probably also be noted that my dad and one of my brothers also share some of these symptoms, though neither have ever seen a doctor for them.)

I have no intention of getting tested anytime soon as I've made it this far (26-year-old male by the way) just dealing with some discomfort. Maybe I'll get checked in the future, but not right now. So here's what I'm wondering:

I've read a number of stores about people getting "glutened" and how they fall ill and often remain that way for an extended period. When that happens and your body reacts, are the symptoms more severe than they were when you were regularly consuming gluten? Does your body become accustomed to it and react more violently after it has healed? Have any of you had issues like me in which you've always had certain related problems and then a number pop up out of the blue or at random periods throughout life?

Part of why I'm wondering is I've recently cut out gluten (sore throat went away after two days. Two days!) and I'm planning on foolishly consuming some gluten a little further down the road when/if my symptoms subside to see how my body reacts. So I'm trying to figure out if it should feel worse than it has before and if mild or severe reactions indicate whether this is something like celiac or other food intolerances.

Sorry if that went long and congrats if you made it to the end. Any insight is greatly appreciated as I'm still a bit lost, overwhelmed, and frustrated by this whole thing.

I am not sure how we can help you if you don't want to admit you may have Ceiac and find out for sure? I don't really understand a person who thinks they may have a disease, but instead decides to self diagnosis it? Do people think they might have diabetes and somehow buy insulin and treat themselves?

My point is, you could have a very real disease with very real consequences. Or you may not. But playing around with being gluten free for a few days and then eating gluten, isn't going to tell you much. It take more than a few days or a few weeks to heal from Celiac. Even A FODMAPS issue takes more discipline and knowledge to live comfortably with it.

I am not trying to be un- friendly....... Just realistic.

[snicking.around]

I am not sure how we can help you if you don't want to admit you may have Ceiac and find out for sure? I don't really understand a person who thinks they may have a disease, but instead decides to self diagnosis it? Do people think they might have diabetes and somehow buy insulin and treat themselves?

My point is, you could have a very real disease with very real consequences. Or you may not. But playing around with being gluten free for a few days and then eating gluten, isn't going to tell you much. It take more than a few days or a few weeks to heal from Celiac. Even A FODMAPS issue takes more discipline and knowledge to live comfortably with it.

I am not trying to be un- friendly....... Just realistic.

 

I understand what you're saying, that it is not wise, or recommended to go down this path without the proper diagnostics or treatment. You've been there, you've experienced it, surely guided others through the process, and this likely fires off a flare. I get that, and I'm not disputing that it's a serious disease, whatsoever. Or that it should be taken lightly or "played around with." That being said, please don't misinterpret my query in a way that makes it seem like I'm taking the bread off my sandwiches this week. I never said I was going to try it out for a few days, but rather I plan to embark on this and see if I'm healing after a few months. This isn't some elementary school science project; I'm trying to research and understand what I'm looking at and figure out if it's applicable to me. That is being done by careful planning and calculating of everything I consume, but what I'm so far unaware of is what to expect. If I feel like I need to see a doctor for this in the near future, I will, but that's not an option for me right now. If you can give me any information on indicators or experience, I would appreciate it.

 

Again, I see where you're coming from. I moderate a forum for a different cause and might have reacted the same way with what I know if someone walked in making similar statements. So thank you for making it clear that this isn't a game, know that I agree, and I would love some insight.

[LauraTX]

While I understand you being compelled to do your own "research", there is already enough research done on Celiac disease where you can go into a doctor, get some blood tests and an endoscopy, and get a diagnosis without having to go through months of self-experimentation first.  If you do actually have Celiac disease and being on a gluten-free diet clears up a lot of issues, will you want to go back on a gluten-containing diet to be tested properly if it makes you feel bad?  No one can predict how eating gluten will make you feel- everyone's reaction is different, ranging from no symptoms despite having confirmed Celiac disease, or very bad life-threatening symptoms.  Either way, if the person has Celiac disease, damage is being done to the gut and beyond.  If you do currently have untreated Celiac disease, a few months may not be long enough to see a conclusive improvement in your body.   The best way to assess that is to take advantage of the scientific research that has already been done, and at least go get a few simple blood tests.  (Do note that you need to be consuming gluten for a period of time for them to be accurate)

 

Many people regret not getting properly tested before going gluten-free, while others are fine not having a definitive diagnosis because the severity of the symptoms speak for themselves.  That is up to you to decide how you feel on that.  However, if in the event you do have Celiac disease, it is best to know as early as possible so you can be monitored for associated health issues, and also know that you must be 100% gluten-free.

[ravenwoodglass]

Welcome to the board. I do understand not being able to see a doctor right now. It is a very expensive proposition if you don't have insurance or even if you do but have high copays. If you are low income you could check with your local hospital and see if they have a sliding fee scale. Many will cover tests done at a low copay. But they don't usually cover the doctor's fee.

There are folks that have gone gluten free without a diagnosis but to see results they need to be just as strict as someone who has been doctor diagnosed. Do read the Newbie 101 thread if you have to go that route as there is more to the diet than just the obvious avoiding wheat.

As to whether your symptoms would be more severe if you slip up or deliberately eat gluten down the road. Well that can vary from person to person. My symptoms were much more severe after just 2 weeks without gluten when it was introduced. Others will not have much in the way of symptoms at all. Down the road if you should be in a position to get tested you would have to go back on gluten for an extended period before testing If you are in the group that does get more severe symptoms that couple of months will be very long months indeed.

It is best to get tested before going gluten free but if you can't for some reason you don't need a doctors prescription to be gluten free. 

[nvsmom]

I have no intention of getting tested anytime soon as I've made it this far (26-year-old male by the way) just dealing with some discomfort. Maybe I'll get checked in the future, but not right now. So here's what I'm wondering:

 

I've read a number of stores about people getting "glutened" and how they fall ill and often remain that way for an extended period. When that happens and your body reacts, are the symptoms more severe than they were when you were regularly consuming gluten? Does your body become accustomed to it and react more violently after it has healed? Have any of you had issues like me in which you've always had certain related problems and then a number pop up out of the blue or at random periods throughout life?

 

Part of why I'm wondering is I've recently cut out gluten (sore throat went away after two days. Two days!) and I'm planning on foolishly consuming some gluten a little further down the road when/if my symptoms subside to see how my body reacts. So I'm trying to figure out if it should feel worse than it has before and if mild or severe reactions indicate whether this is something like celiac or other food intolerances.

 

Sorry if that went long and congrats if you made it to the end. Any insight is greatly appreciated as I'm still a bit lost, overwhelmed, and frustrated by this whole thing.

 

I too think it would be a good idea to get tested sonner rather than later, but it is mainly to spare you future discomfort.  In order to be accurately tested for celiac disease you much be eating gluten (about the equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to testing.  This means that if you have gone gluten-free for a few months, and possibly strated your healing process, you will need to start eating gluten to make yourself sick enough for autoantibodies levels to be detected.  You'll be taking yourself right back to square one and healing will take more time... Not good.

 

Consider getting tested for celiac disease now while you are still sick (and diagnosable).  Ask for these tests:

• ttG IgA and tTG IgG (tissue transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endomysial antibodies)
• total serum IgA - a control test
• AGA IgA and AGA IgG (anti-gliadin antibodies) - an older, less reliable test largely replace by the DGP tests
• endoscopic biopsy - ensure 6+ samples are taken

If your tests come back negative, that is the time to experiment with the gluten-free diet to see if you have non-celiac gluten sensitivity (NCGS).  Give the diet a good 6 months.  Most celiacs will not stop making autoantibodies as soon as they go gluten-free.  It can take months for the immune system to cam down, and then it takes even more time to actually heal.  Most celiacs feel quite a bit better at 6 months gluten-free, but some of us need to stay gluten-free for years before we truly feel well.

 

As per your questions:

Some celiacs do feel a "glutening" horribly if they are gluten-free, but many don't.  I'm one who doesn't feel it worse.  My symptoms (stomach pain, bloating, fatigue, headaches, constipation, arthritic pain) are the same as when I was undiagnosed but I do find it more noticeable.  My theory is that when we are undiagnosed, sick is our normal so we don't notice feeling a little sicker (say a "level 4 sickness") than our normal sick level (of a 2).  There is less difference in how we feel than if we get glutened sick (that "level 4" again) from a healthy state (level 0 of sickness). It's a bigger, and more noticeable, fall to a glutening sick feeling.... Can you tell I live with boys who play strategy games?  LOL

 

Don't judge whether you have celiac disease based on symptoms.  There are 300 symptoms of celiac disease, and some of them are "silent" and not very obviously related to a PB&J sandwich, such as low vitamin A, K, anemia, anxiety or rashes. Open Original Shared Link

 

Symptoms do come and go too.  Some days I would get wicked stomach aches and bloating and other days I was fine.  Some weeks I had horrible arthritis and could barely brush my teeth never mind comb my hair, but other months I was out playing basketball or hiking mountains.  Symptoms wax and wane for no reason I could find.  Sometimes the pizza wreaked havoc with my body and other times it left me happy and full. 

 

What it comes down to, is the only way to know if you have celiac disease is to get tested, and the only way to know if you have gluten sensitivity is to go gluten-free for many months, but if you go that route you won't know if it is caused by celiac disease or NCGS.

 

Best wishes and welcome to the board.

[RMJ]

I don't know why you're avoiding a doctor, but in some states (if you're in the US) you can order your own blood tests. I was originally tested through www.mymedlab.com, and I know there are other, similar companies. In my area mymedlab uses a very reputable clinical laboratory. You don't have to share the results with your doctor.

[snicking.around]

My goodness, where to start.

 

First off, thank you for the welcoming to the board. It's nice to know there is a community available with many individuals who have a background on this and are willing to share their experiences and knowledge.

 

As for the testing, thank you for the information about how to get it done and which resources are available. I see why it is being suggested and understand the ramifications of going a different route. However, I am still not going to get tested at this stage. Seeing as there are several indivduals in this community who have taken a similar path, I thought there would be more understanding (granted, maybe it's that path that has you saying, "don't do it this way."), but maybe I should have been more revealing in the rationalization. I just graduated from college a few weeks ago, don't have a grace period from loan payments due to some unwise career decisions that led me away from school, don't have health insurance, and am in the process of looking for a career with my new degree. I'm not going to get tested right now because until I've got a career and insurance, I can't afford to. For those of you that understand that, raven especially, thank you. Others who will still urge to find a way; I've looked into it and it's just not feasible right now. Thank you for your concern.

 

Thanks for answering my questions. Right now I'm just trying to make this as painless as possible with the resources I have available. From what I've gathered, being that there so many issues attributed to celiac and ncgs there is nothing definitive symptomatically before or after eating a gluten-free diet to point in a particular direction without a clinical diagnosis. That's good to know and may influence decisions made later on, until then I will definitely check out the information suggested.

[nvsmom]

Ahhh... understandable.  Consider keeping a food and symptom journal to help you document your new diet and the resultant change in symptoms.  That can sometimes help with a diagnosis later on.  Remember though that symptoms from food sensitivities can appear within minutes to a few days later, which makes things tough to pin point.  

 

You may want to consider giving up dairy for a few months (6) because the symptoms of lactose intolerance can be similar to that of gluten exposure.  About half of all celiacs are lactose intolerant before they heal because the enzymes that digest milk sugar (lactose) are made on the vlli tips which are often damaged in celiacs.  Many are fine with lactose once they heal.

 

Best wishes.

[ravenwoodglass]

Snicking (great screen name) it is hard when you can't afford insurance. I've been in the same boat myself now for years in large part due to parent loans that I got stuck with. Do find out which hospitals near you have a generous 'indigent' policy just in case you should have an emergency.  You may also qualify for medicaid in the event of an emergency so if heaven forbid something happens do keep in mind that under some circumstances that can go a month or so retroactive. Good to know if you should break a leg etc.

As to the issue of celiac. I'm sorry if some of the responses seemed a bit harsh. While it is best to get a diagnosis if possible if you just can't right now you can't. Do read as much as you can so you can be as gluten free as is possible to be. The Newbie 101 thread is going to be quite helpful. Do ask any other questions you may need to ask and realize that we often have some ups and downs at first as it can take some time to heal. It is a good idea to drop dairy for a bit until you are healed and the food diary can also be helpful.

I hope you are feeling better soon. 

Congrats on the graduation and I hope you are able to find work in your field soon. 

[notme]

my kid just graduated and we are still helping to pay her bills.  i am thankful she is still allowed to be covered by our health insurance.  :/  she is getting ready to go to grad school.  she came down to visit for Easter and i had to give her $$ to get back to where she lives.  hang in there, i'm all about giving pep talks to the young and forward moving!!  carry on!!  

 

the reason we are all cringing (for lack of a better word) at your decision is that we have seen many people go the route you are suggesting (and, make no mistake, the gluten free diet the correct 'prescription' and an intelligent choice to solve the problem) just to doubt their self diagnosis down the road.  so, they either 1. try to do a gluten challenge and they can't because it makes them too sick to continue consuming gluten or 2. quit the diet altogether because they think they're 'healed' <well, maybe they are, because they have been eating what their body needs.  so they eat gluten with 'no' consequences or symptoms, because damage is healed.  so, then, continuing to eat gluten because they 'must not have had celiac all along'.  meanwhile, the damage begins again gradually.  until it 'snicks' up on you (see what i did there?    )  either way, we have seen people regret this course, but if you have no choice right now, just please keep in mind what we all have imparted to you

 

anyways, welcome and good luck, whatever you decide!