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Can Anyone Share Any Insight As To What This Is?


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#1 katie1987

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Posted 30 November 2010 - 12:06 AM

Hey guys! I’m Katie from Australia, hope you’re all having a most excellent day wherever you are ☺ Sorry to jump right in and share my story with you all, I don’t mean to be rude, I’ve just been dealing with this stuff for so long and don’t really have much in the way of answers, and am curious as to whether people with first-hand experience of this could possibly offer me a little insight as to what I may or may not be dealing with. I sincerely apologise, this is probably going to be insanely long and overly detailed.

To start off with, my mom has Lupus, and has always been fairly gluten intolerant, not to the point of being sick, but it has never really agreed with her. I’ve had a few random complaints my entire life: Super sensitive to cold, my hands and feet get so cold they almost go numb, tiny floaters (about the size of a freckle) in my vision, I’m always hungry, get the shakes and become really irritable if I don’t eat really regularly, fibrocystic breasts, 'growing pains', have always had problems with sinus and ear infections, tons of bruises I don’t remember the cause of, mood swings, and I’m a lot smaller than everyone else in my family – I was always by far the tiniest person in my class, and now, at 23, I’m about 5’1 and weigh about 95 pounds no matter how much I eat. The past few years since I was about 18, I’ve become increasingly tired, I can sleep ten or twelve hours a day and still be yawning by midafternoon. I can go to an all-you-can-eat-buffet, eat more than all my friends including guys, and be raiding the cupboards with a growling stomach two hours later with my friends like “How the hell are you hungry?!” I’ve become lactose intolerant, when I previously never was, and my iron levels are pretty low. I go to the bathroom probably three or so times a day easily, especially right after I get up or eat breakfast, I never thought twice about it but apparently that’s definitely on the upper side of normal. Also (overshare?) I have a complete, total lack of libido. Also have always had a bit of an issue with anxiety/depression etc, but not the point where I’ve ever felt as if I needed to be medicated for it.

I put up with these symptoms for a while, my GP mentioned it was probably low thyroid or something, I researched it and it sounded legit, but never actually did anything about it. Then in about July, I just started feeling crappy. Really crappy. Chest pains which wouldn’t go away, joint and muscle pains in literally every single part of my body, headaches and migraines like I’ve never had before, jaw and cheekbone pain, sore throat, aches and ringing in my ears, alternating diarrhea and constipation, abdominal cramps that almost feel like period pain, aches under my ribs, tingling in hands and feet, back pain, irregular periods, lower abdominal/groin pain .. I can’t figure it out. I’ve had a million blood tests (including to check my ANA for autoimmune things like lupus), ultrasound of my pelvic area, chest x-rays, hip x-ray, diabetes tests, checked out by an ENT and oral surgeon, and the general consensus is that it’s all in my head and should probably look into taking antidepressants. The only thing that showed up, out of everything, was that my iron levels are low. My full thyroid panel was perfect.

Determined to prove that I’m not a crazy person, I went to see a homeopathic GP, who did some tests and told me my adrenal glands weren’t working optimally (apparently common in people with autoimmune genetic links) and that I was probably sensitive to gluten, and over time it has messed with my insides to the point where my body can no longer deal with dairy, either. I’ve only been gluten and dairy free for a week, but I can notice some changes .. I still have the joint pains, bloating and cramps, but my ears have stopped hurting/ringing, my hands and feet have stopped tingling, and those visual floaters I’ve had my entire life have disappeared. I know after only a week it’s hard to tell, but seriously .. Could I have missed this my entire life, and never even considered this as a cause? Anything recommended that I do as far as proving/disproving this, besides just not eating gluten? To be honest I’m a definite carb junkie, nothing makes me happier than copious amounts of pasta, and I rarely eat meat because it’s never really appealed to me, so if this is the case, it’s going to be a pretty tough (but hopefully worthwhile) transition for me. I’m not entirely convinced that gluten intolerance can cause all of these symptoms, especially the joint/muscle pain, but if anyone has any kind of insight or advice they’d like to share with me, it would be much appreciated.

Thank you so much, and sorry for typing so much! I just needed to get all of that off my chest.
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#2 WheatChef

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Posted 30 November 2010 - 02:31 AM

Most often times celiacs are former carb junkies. I'm entirely sure how specific of a term that is anymore considering that 50% of the US population at least (not sure about AUS's make up) is set to be diabetic/prediabetic in the next 10 years. HALF of our population is set to develop severe regulatory health issues as a direct result of eating too many carbs and yet no one really seems to make the connection for some reason. The bruising thing is something I noticed at the beginning of your post which may be partially explained additionally by your low meat consumption that you mention near the end. Eat meat, good meat in mouth means good meat on body. Carbs have a noticeable addictive effect on us mentally and physically and if you're a carb junky you'll never truly be full because carbs burn up so ridiculously fast/cause severe insulin spikes/leads to insulin resistance/leads to excess lipid oxidation/leading to hypoglycemia for a short while until you eventually cross a threshold putting you in hyperglycemia (diabetes).

One thing to be mindful of when doing your gluten-free trial is your overall carb consumption. If going gluten-free to you means that you're also reducing the amount of carbohydrates that you're consuming then it might not be so easy to determine which increases in health are related to the reduced gluten intake or the reduced carbohydrate intake. Try going to a site like nutritiondata.com or livestrong.com and determining what your previous carbohydrate intake was and try matching that with gluten-free alternatives. When doing this, the important number to look at is the Net Carb content which is the Total Carbohydrates - Fiber. Fiber will burn in a calorimeter (instrument used to determine those caloric measurements) but it will not "burn" in your gut so it doesn't count as a negative.

That being said, wheat increases blood sugar higher than anything else out there.

Edit: as to your gluten-free trial, certainly keep it up. Some people can unfortunately go for a small handful of months before seeing any real improvement on the diet due to individual severity of damage. Gluten certainly can cause most if not all of the problems you mentioned above, a gluten intolerance is can be an amazingly destructive disease but it affects everyone in different amounts/ways. The tingling in your hands and feet you mentioned, is it an electric tingling or a kind of itchy tingling underneath the skin and primarily located on the palms of your hands and sole of your feet?
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#3 Gerri

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Posted 30 November 2010 - 03:38 AM

yub7gdddddddddddddddddd`]]]]

To start off with, my mom [My sister has Lupus and Porphyria] has Lupus, and has always been fairly gluten intolerant

[I was told to follow a gluten free diet the rest of my life].... Super sensitive to cold, my hands and feet get so cold they almost go numb, tiny floaters (about the size of a freckle)... [You discribe me well with your entire post]


Things different, you didn't mention allergies to drugs, multi-chemical sensitivies, allergy to sulfa, sulfites, sun, eggs, corn, etc etc etc.

Today I am being tested with UV to hopefully rule out Porphyria. Lupus also hasn't been ruled out. My health issues are many. MS has been ruled out. I have been diagnosed with other autoimmune diseases [Ankylosing Spondylitis (HLA B27 positive), celiac, vitiligo and Raynauds). Unfortunate for me autoimmune diseases run in my family.

Meat, Potatoes, vegetables (have problem with as they have natural sulfur - which I have very low tolerance to - that changes into sulfites in our bodies) but I still eat. I follow the celiac diet every day. Pasta made from rice is a main staple in my diet.

Hope you get answers soon. The information I provided is about me. I am hoping autoimmune diseases don't run in your family. Take care

Hugs
Gerri
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#4 sb2178

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Posted 30 November 2010 - 04:06 AM

Did anyone test you for celiac disease? Once you're gluten free, your tests will be normal whether or not you have it. Testing is imperfect, but is at least a start.

Symptom-wise, it's entirely possible. You should also be checked out for nutrient deficiencies (vit D, B-12, magnesium, folate, and... there are more). Those deficiencies can contribute to many of your symptoms. BTW, I shared many of your symptoms and they have resolved.

Whether or not you do tests, and they come back positive, the diet trial is your only truly valid test. If it works, keep it up.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#5 cassP

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Posted 30 November 2010 - 09:30 AM

i just love it that the docs "RUN ALL THE TESTS" but never test for Celiac <_< so beyond annoying to me... they should ALWAYS test for it if you have the kind of complaints YOU have... OR the doc is looking at ANY autoimmune diseases...

as a layman- i would guess you had Celiac or Gluten Intolerance, Hypothyroid (possibly Hashimoto's), Adrenal Fatigue, B12 deficiency... ****i am only thinking outloud- for u- hoping to point u to the right tests...

you said your thyroid panel was "perfect" - but its possible it wasnt- i only say this- because the range for TSH most docs are using is outdated. mine was "perfect" 4 years ago- IT WAS 4.65!!!!!!!!!!!!!!!!! that's not perfect <_< but the range then went up to 5. i think you should get a copy of your results to look at the numbers..

and i think you should get a celiac panel.. but you would have to consider eating gluten again for an accurate test.

but those are my guesses... i hope you find your answers and feel better :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#6 Skylark

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Posted 30 November 2010 - 10:58 AM

Did all that testing include a celiac panel? You'll want that done before you go gluten-free, as SB2178 mentioned. Also, what was "perfect" for your thyroid? We are starting to realize that what used to be considered high-normal TSH can be an early sign of hypothyroidism.

It is very possible to be gluten intolerant and have nothing show up on the celiac panel. The "test" is your response to a gluten-free diet. It can be absolutely life-changing and we've seen a very wide range of symptoms around here from gluten.
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#7 SGWhiskers

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Posted 01 December 2010 - 02:45 PM

Just adding another voice to the stay on gluten, get the celiac panel, consider a biopsy, and after testing is completed definately start a strict gluten free trial diet for at least 3 months. You're symptoms sound like mine and you may want to consider talking mom into eliminating gluten alltogether as well.
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