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Ugh! I Feel Like Crap!


iamhalfsickofshadows

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iamhalfsickofshadows Newbie

Hello new friends! I'm SO glad I found this forum! My eyes are starting to burn from reading about celiac disease all night (& almost every night for a few weeks) on this here computer screen... :blink:

Anyways.. I need your help! Do you think I have celiac disease? I've been suffering for so long, and I'm SO tired of people not taking me seriously! I feel like I can't FUNCTION at ALL. It's hard to even focus on writing this post.. Argh!

Here are my symptoms:

depression

anxiety

a strange dull itch all over my body that drives me INSANE. (mostly at night)

acne

NEVER feeling rested/ very sensitive to light

sore body

headaches

SERIOUS BLOATING/gas :(

inability to focus/have a conversation/read....BRAINFOG!

weird messed up periods (sometimes I don't get it for months)

possibly infertility? D:

I swear to you my face looks different depending on what I eat.. it gets itchy, swollen, and just looks....OFF.

panic attacks

shooting pains in my back/lower abdomen

my hands and feet always seem to be cold

eczema

generally feeling all friggen messed up, all the time.

everything stresses me out

I'm probably forgetting some symptoms..

I've turned into such a bummer to be around... I just want to function. I don't feel well enough to do anything. I don't have a job. I keep dropping out of college classes because I just can't do it. I do nothing all day long, I get angry & I feel dull and so very frustrated & I just want to sleep forever. I don't want to complain anymore!! I've had these symptoms for many years to a lesser extent, it's gotten a lot worse in the last year and a half.. I moved to the Bay area, I'm vegan... and I discovered gluten "meats". What can I say? ...Ahem. Gluten "drumsticks" weekly for uh, maybe 7 months.. Every time I'd eat out at a restaurant I'd go straight for the dishes with gluten meats in them too. D'oh! I'm also allergic to bananas, avocados, melons, carrots... these are all self-diagnosed. I have never been tested for allergies. Pretty allergic to cats, dogs, bunnies... pets in general. I'm pretty sure my symptoms are caused by allergies! I started my gluten-free diet about a week ago.. made some mistakes though :[ I just want to live & function somewhat normally, darn it.

Thank you in advance...

(Oops, I meant to post this in pre-diagnosis, testing & symptoms >_< & I just realized I've left a lot of information out... I'm so tired.)


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mushroom Proficient

Dear halfsickofshadows: welcome to the forum and to people who understand what you are going through.

First questions first: do you have a primary care physician and health insurance? Can you ask her to run a celiac blood test panel on you, right away, before you stop eating gluten, because it's important to be eating gluten up until the time you are tested. Your symptoms are certainly representative of what many of us suffer, and what doctors dismiss as "all in your head" or "women"s issues". I think it is important that you be tested for celiac as soon as possible. Can you do this? Get back to us and let us know. Do you have a doctor you can trust? The tests the doctor needs to run are:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

When you get your results, post them here with the ranges the lab uses for reference. And come back and ask further questions any time. Good luck.

amberlynn Contributor

I can totally sympathize with you! That's almost exactly how I felt before going gluten-free. I didn't have depression though, and my anxiety wasn't horrible (though apparently my stress and anxiety *should* be high, I'm told because of all I deal with, lol). I was just tired, ALL the time. My husband got really tired of my complaining that I was tired all the time! LOL! My back hurt, my legs hurt, my hip hurt (I didn't even think this stuff was related til I'd been gluten-free for 2 weeks, and that pain mysteriously went away!). I always felt like there was a cloud in my head... or a fog. Like the allergy fog they always talk about in those allergy med commercials. I didn't have the energy to deal with my 2 boys, slept like a log when I was actually asleep (I woke up, typically, several times a night - I also didn't realize this until I'd gone gluten-free). Bloating, gas (also gone!), sensitivity to bright light (also, didn't realize it), and my hands and feet are still cold - though its OCT in IL, lol ;). I've never really felt, normal. Ever. I was also hungry ALL the time. I'd eat, then be hungry (starving) again in an hour! I also had nausea- all the time. I varied from diarrhea to constipation all the time. I used to have irregular periods as well, and still suffer from acne.

I functioned though, because I have to. I made it through college by the skin of my teeth, I've managed to care for two very energetic boys and a husband, while maintaining a part time night job (so, that's like working, what, 3 jobs?? LOL).

My doc suggested I give the diet a try b/c I don't have any Celiac symptoms (he said - like weight loss). I really don't have the money for testing, so this is my truth, I guess. My husband believes me, and is 100% supportive. Even though its costing him more money for groceries, lol! I am so much happier now though, and I have so much more energy - though that's not all the way back up to par I think. It is getting there.

I'm putting my 4 year old Autistic son on the diet the first of next month (slowly weaning him off wheat, lol). He's got a lot of stomach issues.

Oh, and I get tested for allergies every year, and nothing has ever come back positive.

Good luck with the diet! It does get easier!

tarnalberry Community Regular

given the symptoms you list, honestly, I would not put celiac disease on the top of the list of likely issues. is it possible? oh definitely.

the list you give:

  1. depression
  2. anxiety
  3. a strange dull itch all over my body that drives me INSANE. (mostly at night)
  4. acne
  5. NEVER feeling rested/ very sensitive to light
  6. sore body
  7. headaches
  8. SERIOUS BLOATING/gas sad.gif
  9. inability to focus/have a conversation/read....BRAINFOG!
  10. weird messed up periods (sometimes I don't get it for months)
  11. possibly infertility? D:
  12. I swear to you my face looks different depending on what I eat.. it gets itchy, swollen, and just looks....OFF.
  13. panic attacks
  14. shooting pains in my back/lower abdomen
  15. my hands and feet always seem to be cold
  16. eczema
  17. generally feeling all friggen messed up, all the time.
  18. everything stresses me out

strikes me as primarily a central nervous system issue. yes, I'm saying that you are stressed out, and not managing the stress well, and that's causing the problems, but I don't mean that in a dismissive way at all. chronic stress does nasty things to the body - chemically speaking. constantly running the sympathetic nervous system can cause the majority of these problems. for me, it's manifested via fibromyalgia (which covers symptom 1, 2, 3, 5, 6, 7, 9, 13, 15, 17, and 18 in your list for me). it is well worth noting that some people find that exposure to gluten precipitates this chronic sympathetic nervous system response - e.g. the gluten is physically stressing out their bodies. this is not true for everyone, but I don't want to overlook it either. it can also cause abdominal issues (because it slows the digestive tract) and infertility (lack of ovulation due to stress hormones).

I think there are a few other things that can cause the bulk of these symptoms as well, such as hypothyroidism and/or adrenal insufficiency (which can be related to chronic stress or not), but others with more knowledge than I will have to talk on those.

but, if you strongly think that it's food, I would suggest that you ask your doctor for the full celiac panel (as listed above), but only if you've been eating gluten regularly (three slices of bread a day for at least the past three months). even if the test results are inconclusive or negative, I would suggest trying the diet (100% - no cheating, avoid contamination) for at least three months, and seeing what difference it makes. do not try the diet until you have had testing, however, if you are going to do testing.

ang1e0251 Contributor

I also wanted to say to have your thyroid checked. Many of those signs could be a thyroid condition. That's a simple blood test. You didn't mention if you're seeing any relief on the gluten-free diet. Let us know.

  • 1 month later...
ktnhsv Newbie

Oh my word, are you my twin? Seriously? :blink:

We have identical symptoms, except I have terrible teeth issues. I've had many tests run over the last 10 years and all were normal.......and I discovered this gluten intolerant thing a few weeks ago. Please talk to me if you want, I literally know EXACTLY how you feel! ;)

Jean'sBrainonGluten Newbie

iamhalfsickofshadows

Most of my symptoms are neurological, which has made it hard to get a diagnosis. A lot of them are similar to yours. There is a lot of information out there about celiac white matter lesions in the brain as well as celiac mimicing such fun things as epilepsy. Also there are studies showing that for some people the immune components they now test, IgA and IgG, can cross react with brain proteins.

I agree with tarnalberry about getting the testing and being willing to try a gluten free diet.

but, if you strongly think that it's food, I would suggest that you ask your doctor for the full celiac panel (as listed above), but only if you've been eating gluten regularly (three slices of bread a day for at least the past three months). even if the test results are inconclusive or negative, I would suggest trying the diet (100% - no cheating, avoid contamination) for at least three months, and seeing what difference it makes. do not try the diet until you have had testing, however, if you are going to do testing.

You might also try a multiple food elimination diet since other sensitivities can be a problem.


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Ivyblaze Newbie

does anyone know what they costs typically are for the blood work to be done? I posted my post under hello from Oklahoma if anyone wants to look at my symptoms and help me out....if the tests are not that expensive I'm willing to do this. thank you

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    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
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