I Need Answers, And Encouragement (Symptoms, How To Begin Gluten-Free,...)

[possiblyglutensensitive]

My symptoms are mainly anxiety, irritability, acid reflux, skin itch, depressed mood and tiredness, mental confusion (difficult to organize myself, brain fog), lots of chronic pain and inflamation (joints and muscles), chronic tendonitis, and stomach cramps, nausea (almost daily), and a history of anemia (both B12 and iron).

I feel like people do not take me seriously when I mention the possible link with gluten sensitivity. I don't want to get tested, I just want to go gluten free, but i feel I do not have the mental strength (because of family judgement and also because it is awkward in social gatherings and because it is hard to give up certain foods).

I am tired and hurting all the time, plus suffer from a lot of mood problems and generalized anxiety (since I was a teen). I am a 38 year old female.

thoughts? thank you!

[sb2178]

if you don't have the mental strength, you can

a) develop it, probably with some isolation for a while during the adjustment period

b ) get tested so you can fling that in their faces or just visit a doc or naturopath who would recommend trying the diet so you have that "officialdom"

c) never, ever talk about what or why you are eating beyond vague excuses like i ate a late lunch or i'd rather see a movie

None of those particularly appeal to me, and may not to you. Do you have a good support system that could fill in for family for a bit? I've needed every bit of friend and family help I've gotten.

Hmm, I don't think this was particularly helpful. But, I will say that I liked the diagnosis process for certainty that it was definitely gluten as opposed to crohn's etc.

[Lisa]

Welcome to the Board!

You have listed a great deal of symptoms that are similar to those of Celiac Disease. Testing requires a blood panel, or an endoscopy exam or positive dietary response. The cumulative positive response is ideal. But, unfortunately not all testing is ideal.

IF you are seeking answers to the road to good health...I would suggest the path that I have described. If those answers are not met through these tests, would suggest you continue on..until you find answers.

Life is way too short to be miserable.

[Lisa]

I also want add that you have found a great place to begin your venture.

If the gluten free diet is what you feel you need, there is boundless assistance here. Feel free to take advantage of this great place.

[rosetapper23]

I would like to add that you should be tested for thyroid problems, since your chronic tendonitis and fatigue might be caused by that. Another cause can be a deficiency in manganese, which can cause tendonitis and contribute to iron anemia. You might consider taking chelated manganese for a short period of time to see if there's any improvement in your symptoms, but be careful about taking it long term, since doing so can be harmful.

I believe that you should try to eat a gluten-free diet--it gets easier over time, and eventually, you'll be able to deal with the social aspects of it.

[DianeMu]

Starting is daunting, but just make the decision and go for it. I sat in barnes and noble for a day - because I'm too cheap to buy all the books - and read and took notes. Bought gluten free for dummies. Do research online - this forum is filled with info, print things out and put it in a notebook. You'll make

Mistakes at first - but it gets easier. In the beginning you need to look up products or call companies all the time - but as time goes on you develop your own safe lists. If you have a gluten intolerance and going gluten free makes you feel better - you won't feel like your giving up anything but pain! There are lots of alternatives out there for the times you want something specific. I do not have a definite medical diagnosis - but I do wish I had one. If you think you want a medical diagnosis get the bloodwork now before going off gluten. If you just want to go for it- you'll know by the way you feel. Good luck!

[possiblyglutensensitive]

I was already tested for thyroid and it came back normal. also, last tests, my iron levels and B12 levels were ok.

I really want to try the gluten free diet but i feel I have no motivation.

part of the problem is family. My mother laughed at me when I mentionned wanting to go gluten free. I feel that a medical paper would give me credibility, but I don't wanna get tested...

maybe just lie to family? I never lie but in order to be taken serioulsy and respected in my choices, I feel it may be best. especially when I visit, there is bread everywhere... and asking them to be careful (to avoid crosscontamination) is like asking them to give you ten thousand dollars. it's like no matter how nicely you ask, her and her husband are so bothered by it and are doing you a HUUUGE favor by accomodating you(I don't visit much though)

[Marz]

Welcome I thought I'd never be able to do the diet, but after feeling so much better, it was natural to just keep at it! Huge motivation to keep gluten-free when you're feeling so great! I hope that's your experience as well.

Sorry to hear about your family - my family was mostly supportive, if a bit confused. I'd suggest you stay away from family dinners for a while - yes you might seem a bit anti-social, but you can visit family for "tea" (no thanks to the biscuits) or meet for coffee instead. You're there to spend time with family, not eat

I'd second the naturopath or dietition suggestion if they're very anti-diet, if someone else suggests going gluten-free, they may be less skeptical of it. Unfortunately there is a bit of a "fad" gluten-free diet going around, so they might be thinking this is just a phase for you, instead of taking it seriously. I think if you take it seriously (Don't cheat, don't let them convince you into taking a bite of their food etc), they will have to take it seriously eventually.

Also think about why they're laughing at you - are they feeling insecure about their own unbridled access to snacks and food of all types? Wheat is quite an addictive substance, and many people have expressed *horror* at giving up their bread, maybe they're just incredulous that someone might attempt to do so

Hopefully when they see how much better you're feeling, they'll realise it's really affecting you.

Good luck, and stick around if you need help/support/to rant

[frieze]

OK, i will address the elephant in the room......Why do you not want to be tested?

[possiblyglutensensitive]

Marz-

thanks for your very encouraging reply. much appreicated.

about the elephant in the room, I'll give you an example. yesterday i visited my gramdma. She is very nice person, but when i mentionned was going to get tested, sehe sort of freaked and went on about how i should stop making up ideas about being ill and how when she was youngm no one complained about or questioned their health, you just didn't do that. It was like a taboo.

my mother has the same attitude. oh did I mention she has fabromyalgia, arthritis, chronic, I mean BAD, chronic pain, headaches, constant fatigue, mystery pain in her leg that is so bad that she can hardly walk anymore (and this is an ACTIVE woman, she used to walk 2 or 3 hours a day, run all errands on foot, bike, rollerblade, very healthy lifestyle). her and her husband eat well, lots of veggies etc.

My mom can hardly walk anymore. she has gone to several specialists, acupucture, physiotherapist, osteopath, chiro, for years (she had other pain before the leg pain). they don't know WHAT the leg pain is 9they think it is sciatic nerve related).

I suggested gluten free for my mom, she totally dismissed it and loves her morning toast with peanut butter and doesn't want to change her diet.

[Jestgar]

Marz-

thanks for your very encouraging reply. much appreicated.

about the elephant in the room, I'll give you an example. yesterday i visited my gramdma. She is very nice person, but when i mentionned was going to get tested, sehe sort of freaked and went on about how i should stop making up ideas about being ill and how when she was youngm no one complained about or questioned their health, you just didn't do that. It was like a taboo.

my mother has the same attitude. oh did I mention she has fabromyalgia, arthritis, chronic, I mean BAD, chronic pain, headaches, constant fatigue, mystery pain in her leg that is so bad that she can hardly walk anymore (and this is an ACTIVE woman, she used to walk 2 or 3 hours a day, run all errands on foot, bike, rollerblade, very healthy lifestyle). her and her husband eat well, lots of veggies etc.

My mom can hardly walk anymore. she has gone to several specialists, acupucture, physiotherapist, osteopath, chiro, for years (she had other pain before the leg pain). they don't know WHAT the leg pain is 9they think it is sciatic nerve related).

I suggested gluten free for my mom, she totally dismissed it and loves her morning toast with peanut butter and doesn't want to change her diet.

But why don't you want to be tested?

[possiblyglutensensitive]

I guess I'm following in their footsteps... shouldn't complain or think outside the box...

and what if I am wrong? what if my tests come back all normal? then I'll be the crazy hypochondirac, and feel hopeless about finding a solution...

oh I forgot to say i get weird facial pain, it feels like nerve pain, almost like small shocks. kinda scary. when I get those pains, I feel crazy and so alone. Oh I KNOW the pain is real, but how do you convince people it is real? hence you start to feel like you are making it up.

and i forgot to mention that my mother has had debilitating pain in her face too, she said it was her trigeminal (?) nerve and that it was excrutiating. not sure she still gets those pains, I think they come and go and same thing, they couldn't find a solution for them.

I am so afraid the tests will come back negative and i will feel like I have nowhere to turn to.

I also forgot to mention my skin is prone to infections and I have had periods i my life where I would get infections when I exercised in the heat... bacterial infections from the sweat. the doctors would give me antibiotics. sometimes some doctors didn't know WHAT I had... on easked me if I had ever had the chickenpox... and each summer the sweat gives me some problems... pimples and stuff, expecially around where my braw is and in my neck and back. I also get read, painful pimples in my neck all the time.

[Jestgar]

I am so afraid the tests will come back negative and i will feel like I have nowhere to turn to.

sooooo.......you're saying that you don't want to take a test, because you want to hold on to the possibility of taking that test even though you never will?

[possiblyglutensensitive]

sooooo.......you're saying that you don't want to take a test, because you want to hold on to the possibility of taking that test even though you never will?

I am seeing my doctor tomorrow. I was SO lucky, I called and there happenned to be a concelation for tomorrow usually it takes 3 to 6 months to be seen.

I am armed with a list of symptoms and concerns. This doctor knows my history, she has been with me for a few years. Depression, anxiety, extreme fatigue, chronic pain, carpal tunnel syndrome, chronic tendonitis, and low iron (to name a few) are things she knows me for.

I HOPE she doesn't dismiss my request for testing!!

[Jestgar]

Good for you! And congrats for being able to break free of your family's unhealthy tendencies.

[possiblyglutensensitive]

Good for you! And congrats for being able to break free of your family's unhealthy tendencies.

thanks! I don't see why I should suffer in silence. I have the right to ask for test don't I? I am hoping for a positive diagnosis though (is that SICK? like i WANT to be sick?)... cause then I'll know what is wrong, where all these little (and not so little) symptoms come from. Why should one live with this pain and not try to make their life better, for fear of complaining too much?

[Salax]

I agree, good for you! Keep us posted on the results.

[Marz]

Make sure she orders the full celiac blood test panel - IgA and IgG anti-gliadin, IgA TTG, Anti-EMA, and a total IgA count to check for IgA deficiency. Each of these are very specific, and one may be negative while the other is highly positive, all depends what your immune system is targeting.

She should not test for IgE - that's an allergy (what my doctor got confused with haha). Hopefully she's knowledgable about celiac disease!

[possiblyglutensensitive]

Make sure she orders the full celiac blood test panel - IgA and IgG anti-gliadin, IgA TTG, Anti-EMA, and a total IgA count to check for IgA deficiency. Each of these are very specific, and one may be negative while the other is highly positive, all depends what your immune system is targeting.

She should not test for IgE - that's an allergy (what my doctor got confused with haha). Hopefully she's knowledgable about celiac disease!

thanks!