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No Diagnosis Or Support From Doctors, Not Sure What To Do Next

undiagnosable crazypants

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#1 Eclara

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Posted 16 April 2013 - 06:39 AM

I need advice on the best next step for me.

I'll try to make this short. I have been sickly pretty much my entire life, had terrible stomach pain and constipation from age 5 on, started getting autoimmune-ish and mental symptoms at 13, been all downhill from there. I was gluten-lite (an uneducated attempt at gluten-free, no avoidance of cc whatsoever and didn't always check labels) for two years starting in 2010 at the suggestion of my then-doctor. In September 2012 I had my levels checked for celiac- total IGA (62, normal range 70-380) and ttg IGA (<1.0, normal range 0-3.9) and IGG (1.0, normal range 0-5.9), which my doctor interpreted as negative. I asked her about both the fact that I had been avoiding gluten for two years and that I seemed to be slightly deficient in IGA and she brushed both off and said that it would 100% have shown up if I had celiac. I got a referral to a gastro who put me on a gluten challenge for two months, during which time I developed fibromyalgia, RLS, gastritis, retriggered my anxiety, OCD and depression, and had such severe derealization I lost the ability to differentiate between dreams and reality and was borderline suicidal.

I had an endoscopy/colonoscopy in December and later found out the gastro only took four samples from the duodenum, all of which were negative. She basically shrugged at me and said, "I dunno" and sent me on my way. I had gone back to gluten free the day of my scopies and I felt much better within the week. Unfortunately, I had been feeling so bad that 'much better' still translated to 'barely functioning'. The fibromyalgia did not start to improve for two months, and I was bedridden for most of that time, and it still has not gotten good enough for me to exercise the way I was before. I am still trying to recover from the major setback of my mental disorders. The gastritis has not healed and I have had to seriously restrict my food options which has led to a 15 pound weight loss and a retriggering of disordered eating. My rosacea is ocular now, my derealization is still too bad to drive, I'm so exhausted I constantly zone out yet I have trouble sleeping at night, I keep getting mystery illnesses and I can't tell if they are my body fighting itself or viral, etc etc. I've been in to the doctor so many times for so many different things in the past four months that all the nurses know me by sight and name.

I am on a gluten-free diet and do my best to avoid cc, but I live with my S.A.D. parents and siblings who think I'm being 'crazy' and therefore overreacting, or are so set in their habits and ways that they simply won't try to accommodate me. My mom is the only one who tries, but she is always so exhausted from work that she is forgetful as well. I do try to be careful, but honestly with the depression and fatigue I probably don't do a perfect job. I'm hoping that if I can get a real diagnosis people will actually take me seriously and at least try not to add to the issue. Most of them also have similar health problems- chronic stomach issues, fibromyalgia, anxiety and depression, thyroid issues, bad bloating, etc., and I think if I can get a diagnosis I will be able to persuade the sicker ones to at least get tested too.

And I hate to sound whiny, but I do feel like mentally I need a diagnosis of something. I keep doubting myself, wondering if I AM just being crazy, or if maybe there's something else and I'm completely wrong about the gluten and obsessing over the wrong thing.

We have a family friend with celiac who said the endoscopy couldn't have been viable because it wasn't a long enough trial, and that I needed to do the Enterolab testing for the gene and other food reactivity tests. I don't know about that either though, are those actually accurate tests?

I'm just getting so tired and overwhelmed, I don't see how I can ever know if I feel bad because I'm not doing a good enough job avoiding gluten or if there's something else wrong with me that all the doctors have just missed so far or if it IS all just in my head. I feel like I'm losing my mind all over again!


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Low IGA, tests not viable- no other blood tests performed

Negative biopsy 12/12/12

Gluten-free 12/13/12

 

Currently unable to tolerate: gluten, grains, dairy, soy, nightshades, all sweeteners except for liquid stevia and coconut nectar, cruciferous vegetables, all fruit except for bananas and berries, eggs, beans, chocolate (noooo).

 


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#2 shadowicewolf

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Posted 16 April 2013 - 06:55 AM

It could be Ncgi, nonceliac gluten intolerence. As far as i know, there are no official tests outside of trying the gluten free diet and having the issues go away. It has many of the same symptoms as celiac.
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#3 pricklypear1971

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Posted 16 April 2013 - 07:10 AM

If you have been dx'ed withultiple autoimmune diseases there is little chance that you'll feel great, even off gluten, so quickly.

It sounds like you have several health challenges. I suggest a new doctor with an approach to helping you feel better - addressing supplaments (have you been tested for vitamin deficiencies?) along with your diet.

It sounds like you are iga deficient, which will render iga based tests void. You need(ed) Ttg based celiac tests. Since you have been scoped, and it didn't prove celiac disease, I would advise a strict gluten-free diet (not light), along with a food diary.

You must understand that celiac along with the other diseases cause body-wide damage that won't heal in a month, six months, or even a year. You also must address deficiencies and make other lifestyle changes as needed. None of it is easy and it won't happen overnight. Unfortunately, there's no "users manual" for our bodies and we all learn as we go along.

Living with AI diseases is a lifelong challenge. Going gluten-free may be key, but it isually isn't the only thing you must do to feel better. The good news is once you begin figuring out what must change, you may find relief from many if your symptoms.
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#4 mushroom

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Posted 16 April 2013 - 01:47 PM

This is what you wrote:

 

I got a referral to a gastro who put me on a gluten challenge for two months, during which time I developed fibromyalgia, RLS, gastritis, retriggered my anxiety, OCD and depression, and had such severe derealization I lost the ability to differentiate between dreams and reality and was borderline suicidal.

 

And then you say:

 

I keep doubting myself, wondering if I AM just being crazy, or if maybe there's something else and I'm completely wrong about the gluten and obsessing over the wrong thing.

 

I think it's pretty clear, it's the gluten!

 

But as Prickly says; going gluten lite is not the answer.  It must be 100% or so close to it that it's 99.999%.  Constant cross-contamination of your food or little bits here and there will just keep the reaction going, forever..... I know that living with glutinous people makes this very difficult, and I'm not suggesting it is an easy thing to do; nonetheless, it is vital if you are going to get well.  And I see, at this point, no reason why you should not.  I do not think you are crazy or wrong.  When you are so tired you just can't think straight.  You just haven't had a real chance to feel better yet.  

 

Can you take a more proactive role in preparing your own food?  At this point you don't have to make life complicated -- eat very simple, plain foods.  You can cook up a pot of rice and  use it for several meals including stir fries and fried rice.  If you don't know how to cook have your mother teach you.  You can make one big meal and freeze serving portions in freezer bags.  You can keep a "protected" area in the fridge labelled just for you so you have your own butter, spreads, etc., with a big red sticker and DEATH to anyone who touches them! :lol:   If you are sharing these things they are all cross-contaminated!  Read the Newbie 101 thread here: http://www.celiac.co...se-coping-with/ and learn what you have to do to protect yourself.  Take baby steps but make sure that they become habit every step of the way.  One step at a time you will gradually stop feeling so tired and be able to tackle more.

 

I send my best wishes for successful gluten free eating.  AND, it really doesn't matter that you don't have a diagnosis.  You have the physical evidence to show what a difference your life can be without gluten, so just do it! :)


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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 Takala

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Posted 16 April 2013 - 02:45 PM

Oh, dear, I really feel for you not having the support, and the low IGA screws it up,  but, the rule of being the grown up is that you have to take care of yourself, first, or you just don't function, because the other sick people will drag you down.  Chasing a diagnosis so others will take you seriously is futile, they will just make up other excuses to not take you seriously, because we people who do have enough mettle and self control to eat properly and make ourselves healthy actually frighten them.

 

You have performed a diet trial and gotten results, call yourself non gluten celiac intolerant, and get on with it.   


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#6 GF Lover

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Posted 17 April 2013 - 06:41 AM

I have to stress Takalas post.  Get on with it girl!  This is all on your shoulders.  Again, don't make it complicated.  Prepare large simple meals, freeze your leftovers.  I boil a couple of chicken breast, throw rice in, sometimes some chicken broth (gluten-free). Make a large pot of it, freeze in containers.  I make this at least every two weeks for a quick meal.  When you don't feel like eating just think of the food like taking a med.  It's a necessity.   Don't even think about your PAST eating disorder.  Eat on schedule.  Have fruit twice a day, vegetables twice a day (even raw if you digest well) and a meat or fish once a day.  Easy on beef products, try to avoid artificial sugars, limit total sugar intake as much as you can, although I indulge in dark chocolate, 70% cocoa.  get frozen bags of vegetable combinations, fresh when in season if you can afford.  Stay away from canned or processed food as much as possible.

 

Just remember, whole food, eat small meals at least three, insist on your own condiments if you use them and always prepare a clean surface in kitchen when preparing your food.

 

This will become a brand new lifestyle for you.  Be determined and proud for being an active participant in your health.  Stay on top of your mental health but don't let it determine the direction of your life.

 

We are here to help, use us as a resource.

 

Colleen 


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:D HAVE A SUPER SHINY DAY :D

 

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*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

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#7 Eclara

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Posted 18 April 2013 - 09:02 PM

Thank you all for the replies!

I probably should have clarified more. I got a bit swept up in my pity party rant and kind of forgot what question I was even asking, apologies! I am eating gluten-free now, not lite, and have been since early February. I cook and prepare all my own food, have my own pots and pans and a tiny cupboard for my gluten free things. The issue is that my family is really, really messy. Like, there are breadcrumbs in the silverware drawer and stuck to the kitchen sink and strewn across the counter and they seem to reappear like magic a few times a day. I feel too exhausted to clean everything three times a day just so I can make food safely.  I rinse off plates and silverware before I use them and I prepare everything on top of plates and up off the counter but I am just not sure if it's enough. Especially when I take into account the amount of times I touch buttons and handles and mistakenly use their dish towels, etc. Someone else suggested to me a makeshift kitchen in my room but I do most of my cooking on the stove and in the oven. I'm very confused about how to tell if I'm doing a good enough job with the gluten when I feel terrible constantly, or how I can possibly tell if there's something else entirely that's currently bothering me.

I think the bigger issue now is that my gastritis pain is really very bad and limits my food really severely. Grains, almost all fruits, red meats, raw vegetables, dairy, processed foods, and high fat things like nuts flare the gastritis. I also have lower intestinal issues with legumes, eggs, soy and I believe fructose. I have to play a balance game of trying to placate my gastritis and avoid my intolerances and it is very difficult. Most days I just end up eating two or three bananas, a few pieces of plain chicken and maybe some steamed spinach or cooked carrots. Occasionally I'll have some squash or a small handful of blueberries. But that's the entire day every day and there's no way I'm getting anywhere near the amount of calories I should be. I don't think my body can heal when it's so undernourished, but I don't know how to work around all the obstacles.

My GP keeps trying to push more PPI's on me but I've been on Prilosec for 6 weeks already and I'm not really comfortable with continuing to take them so long past the recommended period, much less in excessive doses. I haven't noticed a difference with them either way.

I am talking to someone weekly about the eating disorder, and we have it pretty well under control, but I think it's risky for me to have to stay in this pattern of undereating. I guess I still don't know what my question is. I think I'm just starting to worry that the gastritis won't heal up, especially because I can't figure out what to do for it next.

 


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Low IGA, tests not viable- no other blood tests performed

Negative biopsy 12/12/12

Gluten-free 12/13/12

 

Currently unable to tolerate: gluten, grains, dairy, soy, nightshades, all sweeteners except for liquid stevia and coconut nectar, cruciferous vegetables, all fruit except for bananas and berries, eggs, beans, chocolate (noooo).

 


#8 GF Lover

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Posted 19 April 2013 - 03:40 AM

I really feel for you hun.  Rinsing dishes before use should take care of stray crumbs, use clean towel to dry.  Try placing a bath towel on the counter to prepare your food or paper towels.  Get a good gluten-free Probiotic, multivitamin and digestive enzymes.   Have you had your vitamin and mineral levels checked?  Make bigger batches of the foods that are safe for you and eat every hour or so, even if it's a few bites.  Others on the board have very restrictive diets also and can provide advice on how to deal with that.  Others have also found that they are gradually able to add foods back in slowly when the inflammation goes down and some healing begins.  

 

There is light at the end of the tunnel your in.  Keep posting your progress or problems, we are here to help.

 

Colleen 


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:D HAVE A SUPER SHINY DAY :D

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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#9 dilettantesteph

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Posted 19 April 2013 - 04:59 AM

I really feel for you.  If it is gluten, the goal should be to go on as clean a diet as possible until you are better.  As you do that your mind should clear up and you should be able to cope with it all better and things will seem less crazy.  When I am glutened I doubt myself too.  I also get a bad mental reaction to gluten.  It makes me make bad choices about what to eat.  When I get into a glutening and start to make those bad choices it can be a downward spiral that is hard to get out of.

 

It seems like you family causes many potential sources of contamination.  Life would be much easier without that.  Can you get your self a little dorm fridge and microwave to keep in your bedroom?  Could you stay out of the kitchen completely?  Keep your own dishes in your bedroom too and wash them in the bathroom.  Eat produce and unprocessed meats.  If it is gluten, that should clear up your head so that you can figure out what to do next.  

 

If you can't do your food in the bedroom, do what you can.  You can keep your food in containers and wash them before opening.  You can prewash your dishes as suggested above etc.

 

Different celiacs have different levels of sensitivity and you may be able to go back to using the kitchen with some careful prewashing of your dishes.  You may be able to eat gluten-free processed food etc.  You can figure all that our after you can think clearly again.

 

I hope that you can get it figured out and feel better soon.  It would also be a good idea to try to find a good doctor to help you with all this.  It can be quite a search.  Many are not very knowledgeable about celiac disease, even the specialists.


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#10 Eclara

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Posted 06 May 2013 - 05:35 PM

Thank you all! I have finally come to terms with the fact that I will never have a conclusive diagnosis and am trying to settle under the umbrella of gluten intolerant. I have started weaning myself off the Prilosec, and after a rough first week my stomach is feeling much better than it has in a long time! I have also been doing pretty well with avoiding contaminated spaces, I'm still very paranoid about it but I feel that I'm doing the best I can with what I've got to work with. At any rate, I was able to add back in rice cakes and have been experimenting with gluten free oats and breads with okay results. I've also started taking digestive enzymes and a bunch of vitamins, and my fibro has gotten good enough that I have been able to take my dog out for 20-30 minute walks every day this week! It was a pretty quick turnaround, I think the Prilosec was holding me back.

Of course now my lower stomach is acting up and I'm not sure why. I have been having constipation, stomach pain/pressure and truly awful gas for the past four weeks or so. I live in constant terror that it will act up while I'm at an appointment or with other people! I would blame the rice cakes but I don't think I've been eating them that long, although the timeline's a bit fuzzy. I initially thought it was from adding avocado to my diet, but I haven't touched the stuff since mid-April. Then I suspected aloe vera juice was the culprit, but that seems to be a no-go as well.

Also, I have noticed that since I added the grains in I am more prone to binges. As I've mentioned before I seem to swing between binge eating and severe undereating, and I'm starting to wonder if it's not all psychological. I've found that I've been having very strong binge compulsions like I haven't had since last summer. I have also been getting very intense, detailed food cravings at the drop of a hat- they can be set off by a word, a sound, a picture, a smell. Once it's in my head it's like I can taste it and feel it and smell it and it's the absolute worst. It's usually sugary, carby kinds of foods. I had the same food cravings when I was 'detoxing' from grains in the beginning, and I don't know if they're temporary but they definitely don't help with the binge compulsions.

I've also been having odd depressive mood swings. I completely shut down for about four days, scared my Mom half to death. It hit so suddenly, it was kind of alarming. I had just started eating Udi's hamburger buns and oddly the sudden depression lasted four days, just long enough for me to have a bun each day. The day after I stopped eating them, my mood improved. It was very strange. There was nothing happening in my life that should have caused it psychologically, if anything my life has been improving. Could it be related or is that crazytalk?

I suppose I should probably cut out all the grains again and see what happens, but it's going to be really difficult to overcome the cravings for them. Especially now that I was able to add back mustard and found out that my favorite lunch meat was gluten-free! ):

 

Edit: Oh man, now my fibro is flaring again. I really thought I was done with that! Dang.


Edited by Eclara, 06 May 2013 - 09:08 PM.

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Low IGA, tests not viable- no other blood tests performed

Negative biopsy 12/12/12

Gluten-free 12/13/12

 

Currently unable to tolerate: gluten, grains, dairy, soy, nightshades, all sweeteners except for liquid stevia and coconut nectar, cruciferous vegetables, all fruit except for bananas and berries, eggs, beans, chocolate (noooo).

 


#11 dilettantesteph

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Posted 07 May 2013 - 05:38 AM

It isn't crazy talk.  Other's have problems like this.  

 

http://www.celiac.co...udi#entry774235

 

http://www.celiac.co...udi#entry764721

 

http://www.celiac.co...udi#entry713479

 

http://www.celiac.co...udi#entry560927

 

We aren't all the same in what we can eat.  It helps to keep a food/symptom journal so that you can track the sources of your problems.  It can take awhile to find a diet that works for you.  Be patient and I hope that you feel better soon.


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