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tracey*

Can I Ask Your Opinion?

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Firstly, thank god I found this forum! I need info, advice and a friendly chat about these things.

At least for the past 10 years I've been on/off sick - I always get sent home with 'nothings wrong with you' and nothing ever gets diagnosed. I've been feeling like a total hypocondriac as no one ever believed that I was feeling sick at the time. Around April, I happened upon a naturopath who did allergy testing and it came up with alot of things I should be avoiding.

I've been gluten free for about 4 months now - and apart from a couple of small cross-contaminations (last one being last week), I've been feeling quite good :) As I posted in another thread, I haven't been diagnosed celiac, and I was going to go back to regular food so I can test but I don't think I want to risk getting all the symptoms back again. Before going gluten-free, I felt like I was going crazy so I hope you can understand why I don't want to go back for anything.

Symptoms before gluten-free

- tiredness (extreme, at times)

- headaches

- dizziness

- nausea

- stomach cramps

- mouth ulcers (which I have at the moment)

- tongue ulcers (which I have at the moment)

- tongue swelling (which I have at the moment)

- painful joints

- swollen joints

- panic attacks

- major problems with anxiety/agoraphobia (which I have at the moment)

- cloudy head

- mild 'sadness'

- bloating

- low iron count (that I can never seem to level up)

- throat swelling (the scariest)

- itchy mouth

- iregularity (which got better after I started taking Inner Health Plus)

- i don't put on weight easily

- my skin is really blotchy and red, never clears no matter how much water i drink

- sticky left eyelid

- severe backache (thought i slipped a disc or something)

Antihistamine has worked in some cases, but doesn't get rid of the symptom altogether.

As alot of people have said i'm 'sick and tired of being sick and tired' and I want to start a family in the next 2-3 years. I owe it to myself and my family to get healthy and I really want to bounce off the walls for the rest of my life! The main reason I went gluten free is because of the agoraphobia and throat swelling - very scary.

So anyway, what do you think about my symptoms? Typical? What's your opinion on not going back to gluten to get tested? Am I being silly?

Thanks! :)


wheat free & yeast free since may '06

also lactose intolerant

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I have had most of the symptoms you mentioned. I am a Celiac. It sounds to me like you've found your answer. Glad you're feeling better (aside from the glutening). This forum is wonderful. Welcome!


~Angie~

Gluten free since May 2004

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I wouldn't want to go back on gluten to be tested. I did it for six weeks, my tests were still negative. You might check out the I can't live like this thread on the same topic!! You're not crazy. If you ate it for one day, that would be all the proof you'd need!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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at various points, doctors have wanted me to eat gluten as well. (i have + bloodwork, but not a positive biopsy).

I told them no. not an option.

call me whatever you want. Celiac, gluten intolerant, gluten sensitive, gluten allergy, or crazy patient who thinks gluten is bad for her (which is what some of my docs think!)....doesn't matter to me. my symptoms are too severe for me to do it (and, similar to yours, with the inclusion of severe, horrible D.)

many others will tell you that you don't need a doctor's dx to not eat gluten! If you feel better, you know your answer. It mainly depends on if you want the "definitive" answer, and that is a personal issue that each person must decide. We understand either way!

Either way, do what you think is best. I am young (25) and want to start a family in the next few years also, so I understand your concerns!

Best of luck, and let us know if we can help in any way.

xoxo, Laura

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Thanks for the replies :)

I could cry I'm so happy I found people like me - seriously! Especially when you, CarlaB, said 'You're not crazy' - because I didn't think I was. I didn't really know about food allergies and effects until this year.

LauraJ, I'm 25 too! I hope things are better for you.


wheat free & yeast free since may '06

also lactose intolerant

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Hi Tracey! Welcome to the Board!

If I had a dollar for every celiac or gluten intolerant person who was told "it is in their head" or they are "crazy" or they are a "hypochondriac", I'D BE RICH!!!! It unfortunately happens way too often. Considering the average time from the onset of symptoms to finally being properly diagnosed is 11 YEARS, it's no wonder we have been fed those lines throughout the years. Oh, and let's not forget the old stand-by "It's IBS" (what the doctor really means is "I'm Basically Stumped")

You will find a wonderful support system here of really caring, knowledgeable people. Any questions, just fire away!

Again, welcome!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Tracey, you are definitely not crazy. :) Believe me when I say I know exactly what you feel like and how absolutely frustrating it is to constantly be battling to feel any endurable semblance of "normal", and how disheartening it is that the majority of the world just does not understand. Once again, you are NOT alone! There are millions of us out there, and millions more that aren't even diagnosed. Take heart!

Also I agree with the wise CarlaB that you shouldn't have to go back on gluten to get tested. My Upper GI doc told me the same thing, to which I very politely replied, "No way in H*LL sir."

Be strong and ever patient, better days are ahead.

(And at 26 like yourself and Laura, I am also hoping to start a fam in the next few years... I'm glad we can catch this now before the hurricane of chillens demands all energies!)

-Christian


Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:

Antigliadin IgA 33 (Normal Range <10 Units)

Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)

Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:

Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

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wise CarlaB

:lol::lol:

Usually people put another word between those two words ... give you a hint, starts with an a and ends with two ss!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Ohhhh Tracy, I could have written your post!! With the exception of the weight issues... I can't LOSE it after having my 3rd child, and the mild sadness - I was dx with all out depression.

I've been going on and off gluten for several months now, while dealing with my daughter's issues.... and I have now been 100% gluten-free since Sunday - almost a week, and I'm feeling SOOOOOOOOOOOOOOOOOOOOOO much better. Not great, but a TON better than I have.

It seems it was really getting the best of me.... also feeling a bit hypocondriach-ish. (Is that a word??) So, I'd be gluten-free for a few days, and then I'd eat something I knew I shouldn't eat....and I'd pay for it. And, then assume that it was something other than gluten.

I've been tempted to cheat...but I haven't. And, at this point.... if a doctor were to suggest to ME that I start eating it again in order to test, I'd tell him that the response to the diet has been so great that there is no way on this EARTH I'd eat it again. Not for a test, not for anything.

Lots of luck to you!!!!!!!!!!!!!!!


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Firstly, thank god I found this forum! I need info, advice and a friendly chat about these things.

At least for the past 10 years I've been on/off sick - I always get sent home with 'nothings wrong with you' and nothing ever gets diagnosed. I've been feeling like a total hypocondriac as no one ever believed that I was feeling sick at the time. Around April, I happened upon a naturopath who did allergy testing and it came up with alot of things I should be avoiding.

I've been gluten free for about 4 months now - and apart from a couple of small cross-contaminations (last one being last week), I've been feeling quite good :) As I posted in another thread, I haven't been diagnosed celiac, and I was going to go back to regular food so I can test but I don't think I want to risk getting all the symptoms back again. Before going gluten-free, I felt like I was going crazy so I hope you can understand why I don't want to go back for anything.

Symptoms before gluten-free

- tiredness (extreme, at times)

- headaches

- dizziness

- nausea

- stomach cramps

- mouth ulcers (which I have at the moment)

- tongue ulcers (which I have at the moment)

- tongue swelling (which I have at the moment)

- painful joints

- swollen joints

- panic attacks

- major problems with anxiety/agoraphobia (which I have at the moment)

- cloudy head

- mild 'sadness'

- bloating

- low iron count (that I can never seem to level up)

- throat swelling (the scariest)

- itchy mouth

- iregularity (which got better after I started taking Inner Health Plus)

- i don't put on weight easily

- my skin is really blotchy and red, never clears no matter how much water i drink

- sticky left eyelid

- severe backache (thought i slipped a disc or something)

Antihistamine has worked in some cases, but doesn't get rid of the symptom altogether.

As alot of people have said i'm 'sick and tired of being sick and tired' and I want to start a family in the next 2-3 years. I owe it to myself and my family to get healthy and I really want to bounce off the walls for the rest of my life! The main reason I went gluten free is because of the agoraphobia and throat swelling - very scary.

So anyway, what do you think about my symptoms? Typical? What's your opinion on not going back to gluten to get tested? Am I being silly?

Thanks! :)

i went on the gluten challenge ot do the biopsy and lasted 3 days, i was so sick and had nearly all the symptoms you described. listen to your body, it took a lot of time for me to understand that. hope you are feeling good about whatever decision you came to in the end. best wishes. tracey


married with 3 boys, maclain, dylan and finlay. symptoms for more than 10 years but only diagnosed may 06. lactose and casien intolerant may 06.

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There are such an array of symptoms for Celiac, that yes, these could be related to that. However, if you continue to have these symptoms, esp joint pain, fatigue, ulcers, anemia...you should go to a doctor and get investigated for some other conditions/diseases too, ie. lupus. I understand too--eventually, after getting no answers, you do start to doubt your own sanity too ! Hang in there...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Thanks again everyone :) I feel like I've had a religious experience here - I really feel like I can do this properly now. It's comforting to read everyone's stories and advice, keep them coming if you have some!

jenvan, I think some of the pain in the joints is from my RSI (i work on a computer 10+ hours a day, for the past 5 years) so I'm not worried that it's something else. My doctor has always said it's RSI / arthritis - and that my low iron isn't as bad as it used to be a couple of years ago. Thanks for mentioning it though, I guess everyone needs a check up now and then :)


wheat free & yeast free since may '06

also lactose intolerant

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Oh! I have another 'symptom' I think, no doctor has told me what it could be or what it is but I think it's a vitamin deficiency -

* funny taste/smell in my mouth/nose. It's almost metallic, sometimes smoky (though I've never touched a cigarette).


wheat free & yeast free since may '06

also lactose intolerant

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I get the metallic taste too! I have at one point or another had everything you've mentioned except weight loss (I Wish!!). When I told my doctor that my tongue feels swollen, she rolled her eyes.

I'm just waiting for my bloodwork to come back.

I've been tested for lupus, but it was negative. I'm not ruling it out, since it can take a few times of testing before anything shows up, but I'm counting on alot of this being gluten related.

HeatherR

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When I told my doctor that my tongue feels swollen, she rolled her eyes.

That really sucks! I've taken photos of my tongue this past week - they're terrible photos to look at but you can clearly see that something's going on with my tongue. I'm leaving proof :P

Fingers crossed for your bloodwork :)


wheat free & yeast free since may '06

also lactose intolerant

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I just wanted to add another possible symptom that is new to me - STOMACH CRAMPS

These are cramps like no other I've experienced for a while. Definately not pms-cramps, these are in the upper stomach area and have lasted about 8 hours now. I was able to take a nap and get some relief but since waking up it's getting painful again. No gas, no irregularities, just tight cramps and some nausea. Top part of my stomach feels bloated and hard slightly.

I had a couple 'new' foods today that I thought were perfectly OK - pickled ginger, 100% passionfruit chew and a museli bar - all labelled gluten free but these days who knows...

Can't see the doc for another 8-9 hours at least (it's almost the middle of the night here). It's not so bad that I need to go to the emergency room - but if anyone has any home remedies I'd be so grateful right now.


wheat free & yeast free since may '06

also lactose intolerant

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Tracy, sorry, no ideas ... but I know that my stomach needs very simple whole foods right now. I just don't tolerate processed foods well. Most of us have a leaky gut that needs to heal, then we'll better be able to tolerate the more processed foods. The foods you ate may have been gluten-free, but they still may have been too much for your sensitive system to handle right now. I am basically living on meat, veggies, eggs, with a little rice and potatoes.

Be sure to stay hydrated.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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It's tough to get an accurate diagnosis from people on message boards, but seems to be about as tough from doctors as well. I'd put a heating pad on the stomach cramps!

I've never gone to a doctor for diagnosis, because they are aggressive, invasive, their medications are too strong, they don't put two and two together, I mean, they don't consider how any one thing might be related to another, so it's all decades of band-aid treatment for this and that, and you never get better, it seems to me. But you're taking a risk by just comparing yourself with others and self-diagnosing.

I took that risk myself, though, choosing to see if I could come up with my own answer. I had a lot of the symptoms you describe...I've had panic attacks and agoraphobia in the past (found a therapist who treated it by a drug-free method called "flooding," in which you stay in an area that makes you panic and just wait until the panic wears off before you leave the place--took me about a year of doing that with the therapist before I can manage on my own from there...and I learned that the more you avoid areas that make you panicky, the more you feed that syndrome...the more you just wait out a panic attack, the stronger you become, until eventually you get over the agoraphobia), I've had funny smells get stuck in my nose, mouth sores, foggy-headed, intestinal symptoms that were just crazy...like diarrhea and constipation sort of happening at the same time (talk about nobody BELIEVING you!!!!).

Anyway, I went gluten free, making certain to avoid cross contamination and always comparing ingredients on everything with the safe celiac list, etc., and now, at just about 9 months totally gluten free...my life seems to be on the mend. Everything just gets better all the time. If a doctor told me to eat gluten to see if it had caused all my other problems...I'd be like...HEy, if I just got well from having ingested rat poison, and then you told me to eat some again to "make sure" that's what I'd gotten well from...well that idea is just nuts. I would refuse that.

I like whoever it was who said it best...IBS...."I'm basically stupid"...LOL...what the heck is IBS? That's a pretty dumb idea too!

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It's tough to get an accurate diagnosis from people on message boards, but seems to be about as tough from doctors as well.

I guess this shows how desperate some of us become. It's a sad state of affairs when a message board is the best place to go for help!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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First of all, you are not crazy!!! I was diagnosed bipolar and borderline personality disorder. It wasn't until I went to a therapy program (specializing in bpd) that anyone (other than my husband) believed that anything physical was wrong!! The therapist helped a ton, but said that my problem wasn't that I was "crazy" but that I had a physical problem that I had to find, and deal with (emotionally). He even contacted a few of my docs (with my permission) in an effort to get someone to test me for SOMETHING.

Anyway, I had bloodwork done (finally, after 6 years), but my gp said going on a gluten-free diet was "up to me". I've decided NOT to go to a gi. I'm DONE with doctors.

I also have sleep apnea (and my cpap isn't working correctly) which is why I'm feeling tired. But even sans cpap I feel a TON better on the gluten-free diet. I'm OFF meds, out of therapy, and HAPPY!

I hope (dx or not) u find the health u deserve! It doesn't matter what any doctor says, you know your body, if u feel better, u feel better and that's the end of it. Congrats!

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Thanks for posting your story Adelle :)

I guess this shows how desperate some of us become. It's a sad state of affairs when a message board is the best place to go for help!!

It's true.

But at the moment, I trust the experiences here enough to know what I'm going through is a part of healing and figuring things out for myself. If I'm passing out and vomiting etc or if this lasts more than a couple of days, then that's a different story and I'd get myself to the ER somehow.

Still a bit 'raw' this morning, but not as bad as last night :)


wheat free & yeast free since may '06

also lactose intolerant

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