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My Story Thus Far


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7 replies to this topic

#1 waitingtopounce

 
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Posted 08 December 2010 - 05:06 PM

Where to start... Let's just go with a timeline eh?

Age Symptoms
0-10 Constant doctor's visits for stomach problems, no diagnosis
11-15 Constantly sick, pneumonia, bronchitis, strep, and first menstrual period lasted for 36 days STRAIGHT.
16-18 Depression, anxiety gets worse, eczema, weight gain, bloating, stomach problems return. Dx with ulcers.
19 Mono w/ all complications. Severe depression. Multiple cases of UTIs and yeast infections. Fatigue sets in for good. Tentatively Dx with IBS.
20 Go tentatively vegan, start to see positive changes in energy, begin to realize that I need to be careful with dairy. First shoulder surgery.
21 Second shoulder surgery. Officially go vegan for a while. Depression and anxiety worsen (more pasta and breads in diet due to new boyfriend/soon to be husband)
22-23 Car accident, neck muscle tear, Third shoulder surgery, and wisdom teeth out. Nerve damage in forearm - no determined cause. Sleep problems worsen. Start therapy. Dx with heat exhaustion.
24 Determine that I am lactose intolerant. Dx with GAD, PTSD, and associated depression. Dx with cold sores and ulcers. Dx with heat exhaustion.
25 Put on higher dosages of the medications I had been taking since 23 for GAD, PTSD, Depression, sleep disorder, ulcers, cold sores, allergies, and nasal congestion. Dx with dehydration. Dx with B12 overdose. Dx with Gastritis. Dx with Vitamin D deficiency and mono. Sent in to get testing done for fatigue and cause for mono to come back. Sent to check for appendicitis. Negative blood work on malnutrition and tTGA. Sent to see specialist.

It's ridiculous. I've lost weight fast and feel like crap and no one seems to care. It's like they all think I'm crazy.

Doesn't matter apparently that they took the blood test for the tTGA screening a week and a half into the gluten free diet. Or that they haven't done a colonoscopy, scope, or biopsy. Apparently a CT to look at the appendix and the rest of the organs is enough to tell everyone that I just have constipation. Nothing to worry about. She's just crazy folks! No big deal. She just needs to take some miralax and she'll be just peachy keen. Oh a doctor's note for your boss? Pssh. You don't need that. You should be perfectly healthy according to all of OUR tests. We have no clue why you are keeling over in pain, practically fainting from dizziness and can't stay awake to save your life. Maybe you should drink more water.

Grr.

-Cayse
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#2 ravenwoodglass

 
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Posted 09 December 2010 - 04:08 AM

I'm so sorry you are going through I this. I can certainly sympathize as I have been there. Your thoughts in another post about seeing a doctor at a larger facility might be a good one. After all testing is done is for celiac do give the diet a good strict try for a few months. If you have a gluten issue things should improve but it might take a while. Do make sure you check all the meds your on with the maker when you do go firmly on the diet. Even a tiny amount of gluten can keep you forming antibodies.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 waitingtopounce

 
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Posted 09 December 2010 - 08:56 AM

Do make sure you check all the meds your on with the maker when you do go firmly on the diet. Even a tiny amount of gluten can keep you forming antibodies.


That's good to know. Thanks ravenwoodglass!
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#4 Skylark

 
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Posted 09 December 2010 - 10:20 AM

What a terrible story. Are you feeling a little better gluten-free? I had all sorts of psych problems that resolved with a gluten-free diet and good nutrition.

Is there a way you can change doctors? You need someone who will take you seriously.
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#5 Looking for answers

 
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Posted 09 December 2010 - 11:51 AM

Hmm...besides your should surgery, I could write your post myself (see signature). I'm now in my early 30s and spent most of young adult life and teenage years completely sick. I had Bronchitis so frequently that my doctor feared major scar tissue in my lungs. The coughing caused a hiatal hernia, I had my appendix removed, and I had a horrible case of mono at 17 - my spleen was so enlarged that I could acutally see it protruding! I remember talking to my PCP about my health concerns, and he actually told me to just keep my hands washed. Seriously!? A few years later autoimmune problems began surfacing on my blood tests (tests I had to push for after a weird thing happened with my leg). Long story short, if you feel miserable right now, I would recommend an elimination diet. I'm currenly on one myself to figure out the cause of my chronic gastritis. I'm eating only veggies, turkey or lamb and a few fruits, oh, and sweet potatoes. It's not glamorous but it's proven helpful. Definitely get gluten our of your diet but you may also want to try ridding your diet of the other common allergens like dairy, soy, corn, nightshades, etc. See if it makes a difference. the key is to reintroduce them slowely (over a 3-4 day period) and keep a journal and how you feel.
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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed

#6 jebby

 
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Posted 09 December 2010 - 08:14 PM

I had a lot of the same symptoms as you. I was diagnosed with IBS when I was 19 years old by a gastroenterologist who did not run any tests. He actually told me that I had probably been sexually abused and that I had abdominal pain because I was repressing it.
I attended medical school from 1999-2003 and we had one lecture on celiac disease and a guest speaker who came in with "classic" symptoms of celiac.
Celiac is, unfortunately, not on many MDs radars....it took me 14 years to diagnose myself (IBS, hypothyroid, anemic, oral ulcers, joint pains, anemia). I attributed all of my symptoms to stress over the years....
Isn't it nice to finally have an answer?
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#7 waitingtopounce

 
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Posted 10 December 2010 - 08:22 AM

Wow, nice to know I'm not alone :)

As far as changing doc's is concerned: I'm in the middle of trying to do that, but everyone keeps telling me that I need to see one GI first before switching to a new one. And since we haven't had an official visit we've only had phone chain interactions via his nurse, I need to keep my current GI until we meet Wednesday. Once that happens I can decide to take my files up to the bigger city. I already am trying to get my files from my clinic from my general physician and transfer them to a new physician since she had me doing the run around. But even that is turning out to be a mess because everyone wants to keep the same players in the game. STUPID. I don't want the same players in the game. I want a new team.

It is definitely nice to finally have something to grab on to. I'm still struggling with the inner battle of "am I just self-diagnosing? is this really what I have?" but this just makes too much sense. I can't see how I would have anything else. Every other time I've thought it might be something else i still had doubts in my mind of "well i don't have that symptom...or that one...and that one doesn't happen often" but with this, the symptom list and your guy's testimonies it's like "yup, yup, yup, that too, that all the time, yes, oh yeah, ugh yeah that too, man you too?" My mom and I started looking at my brother and my two sisters for symptoms as well as my dad. My dad has recently gone vegan and mostly gluten free (he sometimes has crutons on a salad). Since that his eczema has gone away, he's been able to finally lose weight because he's not hungry all the time, he has energy to do things after work, he's sleeping better, his stomach doesn't feel like he has acid reflux or ulcers, and he feels "amazing". My mom is now going to watch and see how he feels when he does eat the crutons. See if he gets a stomach ache with that. He has really bad anxiety. And definitely has anger/irritability issues. Oh and lactose intolerance.

My little sis and bro have DH. No doubt about it. All over their elbows back and necks. Really bad stomach problems, joint aches, muscle problems and gas for both of them. Both have bad anxiety and depression.

My older sis loses weight at the skip of a beat and has now had 2 miscarriages late in the first trimester. She is tired all the time, has crazy mood swings, and bad depression issues. She has anger/irritability issues. She also has dry skin problems like me, not DH but more eczema like me and my dad. Bone aches and possible early osteoporosis.

With all of this, it's really hard to go: oh ok, so all of us are just crazy and none of us have celiac.

I think I need to have the celiac gene tested. Then maybe they'll all take me more seriously. I guess I also haven't told them about my family... That might help. But none of them are officially diagnosed.

Anyway. I'm rambling. Thanks for all the support guys.

-C
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#8 ravenwoodglass

 
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Posted 10 December 2010 - 01:45 PM

I think I need to have the celiac gene tested. Then maybe they'll all take me more seriously. I guess I also haven't told them about my family... That might help. But none of them are officially diagnosed.

Anyway. I'm rambling. Thanks for all the support guys.

-C


If you do decide to have genetic tests run please make sure they are not just looking for DQ2 and DQ8. I am firmly diagnosed celiac and both of my children were also including one by biopsy. The one who was diagnosed by biopsy later decided she wanted to have testing done again as living gluten free was hard in college. She went to one of the best hospitals in the country where they did a gene panel. Long story short she was told she was 'misdiagnosed' because she doesn't have either of those 2 genes. She went back on gluten and now considers all issues to be stress related. That prompted me to have my genes tested and those results lead me to do some research. It turns out my gene, I am a double DQ9 is considered a celiac associated gene in some other countries but here is condidered to be an RA associated gene. Keep in mind that gene testing and research is a very new science and we are learning more every day. It can not be used to firmly rule out whether or not you have celiac.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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