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The Pieces Dont Fit- Help!
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i'm 23 years old. ive been to 5 different doctors and no one can figure out whats going on. here are my symptoms

-high ANA

-joint pain throughout my entire body

-hair loss

-inconstant stool

-one hand cold while the other is warm

-in and out of anemia for quite some time

-extremely low iron stores

-low b12

-foggy mind

ive tested negative for

-lupis

-rheumatoid arthritis

-sjogrens

ive taken multiple xrays all which have some back normal, and my foot got so swollen last weekend that i could not walk for 3 days. they did test for celiacs and it came back negative. however, ive done SO much of my own research, and ive found that those symptoms are common for people with a gluten intolerance. ive also found and heard that 7/10 times the test is a false negative?? im honestly so confused and in so much pain. i feel miserable. if anyone has any insight i'd really appreciate it.

Edited by kvtlove
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Hi,

Did the doctor test you for NCGI? I'll give you the answer, no. Why? Because it hasn't been acknowledged by the medical community long enough for them to figure out a test for it. That doesn't mean people aren't walking around with NCGI every day though, and being told by their doctors that they don't have a problem. So, the thing to do is test yourself. Go on the gluten-free diet for 6 months and see if it helps. While you are at it, drop all diary and soy and nightshades, which can also cause problems. The gluten-free diet is the only treatment for celiac disease and NCGI anyway.

The other test you could do is to ask your GI for an endoscopy with biopsies for celiac testing. The endoscopy can tell you if you have celiac, but not NCGI at the moment.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

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i'm 23 years old. ive been to 5 different doctors and no one can figure out whats going on. here are my symptoms

-high ANA

-joint pain throughout my entire body

-hair loss

-inconstant stool

-one hand cold while the other is warm

-in and out of anemia for quite some time

-extremely low iron stores

-low b12

-foggy mind

ive tested negative for

-lupis

-rheumatoid arthritis

-sjogrens

ive taken multiple xrays all which have some back normal, and my foot got so swollen last weekend that i could not walk for 3 days. they did test for celiacs and it came back negative. however, ive done SO much of my own research, and ive found that those symptoms are common for people with a gluten intolerance. ive also found and heard that 7/10 times the test is a false negative?? im honestly so confused and in so much pain. i feel miserable. if anyone has any insight i'd really appreciate it.

Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --
THIS IS IMPORTANT
- it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.

It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

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Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --
THIS IS IMPORTANT
- it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.

It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

WOW thank you for that information!! i do have all my results. heres the info i have:

-TTG antibody, IGA

-IGA

-HLA-DQ2, A1, DQB1

-immunoglobulin A

-thyroid peroxidase antibodes

all of the above came back negative/normal. my vitamin D has not been tested. from what i see on the report thats all the tested and based on the things you listed, it wasnt enough. even with my thyroid, it looks like it was just the "general" test. no TSH, Free T4, Free T3.

i have a full body bone scan this week. ive decided to start the gluten free diet regardless. im only on my second day so its much too early to tell anything, but im committed to it 100%. it would be comforting to see something on paper validating everything. this is all so exhausting!!

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Hi,

Did the doctor test you for NCGI? I'll give you the answer, no. Why? Because it hasn't been acknowledged by the medical community long enough for them to figure out a test for it. That doesn't mean people aren't walking around with NCGI every day though, and being told by their doctors that they don't have a problem. So, the thing to do is test yourself. Go on the gluten-free diet for 6 months and see if it helps. While you are at it, drop all diary and soy and nightshades, which can also cause problems. The gluten-free diet is the only treatment for celiac disease and NCGI anyway.

The other test you could do is to ask your GI for an endoscopy with biopsies for celiac testing. The endoscopy can tell you if you have celiac, but not NCGI at the moment.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Could you please explain what nightshades are? I've been wondering this for a while. Thanks.

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I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.

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I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.

what is it about them that causes the issue? i noticed i am ok with bell peppers. but potatoes mess me up. i think eggplant does too. i haven't payed much attention yet to how i react to chili peppers or paprika. i think tomatos are starting to bother me too. the night i broke out in hives, i had pizza, a couple beers, and some cherry tomatos from my friends garden. perfect mixture for a hive breakout i guess. funny thing is they started out on my stomach. it was as if my belly was on fire and felt toxic from the inside out and the hives were just a way of sending that message as well. it took me months to figure out what was happening as i did not understand if the bloating, hives, fatigue could all be food intolerance. of course dr's were clueless.

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Yes, the nightshades give me hives, too. They also promote inflammation within the body. Don't ask me the biochemistry of it because I flunked chemistry in school :D

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I would seriously think about doing an elimination diet (look for one that is pretty strict). Make sure you keep a journal to document everything! Make sure you are strict with inflammation causing foods - gluten, dairy, sugar, nightshades, alcohol, caffeine. It is so much work but it is so worth it! BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(. Two years later (for me) and I am finally getting it....I think/hope.

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The nightshades have alkaloid type chemicals in them. Alkaloids are also used in some medicines. Tobacco is a nightshade. Potatoes, peppers, eggplant, tomatoes are the food nightshades.

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BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(.

Ah yes, the solanines, that rings a bell. I have problems with all the defense mechanisms of plants - solanines, lectins, everything they throw up to keep the bugs out.

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I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.

You're missing one: tomatillos :)

Here's more on the family in general http://en.wikipedia.org/wiki/Solanaceae

I'm allergic to tomatos so i limit my intake on potatos and the like for just because reasons.

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I would seriously think about doing an elimination diet (look for one that is pretty strict). Make sure you keep a journal to document everything! Make sure you are strict with inflammation causing foods - gluten, dairy, sugar, nightshades, alcohol, caffeine. It is so much work but it is so worth it! BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(. Two years later (for me) and I am finally getting it....I think/hope.

right now im going gluten free. as for dairy, i think ill hold off on that for now. i honestly dont eat too much dairy except for greek yogurt and cheese (very occasionally), so i dont think its something prominent enough in my diet to be causing all these problems. foods with gluten, however, were very prominent so im starting there. thank you SO much for your insight

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"so i dont think its something prominent enough in my diet to be causing all these problems."

Please don't dismiss it though. If it is gluten you could have created enough damage that it made other foods a problem. Or maybe other foods were a problem all along? Who know, I don't think anyone does. My symptoms prediet.

-very thin, weak, fine hair

-psoriasis

-Psoriatic Arthritis (every joint affected)

-possible Ankylosing Spondylitis

-Reynauds Syndrome

-Sgorgens

-Mortens Neuroma

-very thin dental enamel and gingivitis

-cold hands, purple knuckles

-chronic UTI's

-jaundice

-chronic inflamed lymph nodes

-anemia

-poor circulation/very low blood pressure

I am gluten free but because I did overindulge in nightshades and too many carbs in the past month I am getting a couple of spots, have swollen knuckles and I am feeling a bit of pain in my large joints and upper neck.

I know everyone is different but I wouldn't dismiss an elimination diet for just 10 days. It may be too hard to think about right now but in the future if things get bad, it's worth it to consider - just to see. I am very impressed with the power diet holds on my body. My younger sister has some autoimmune conditions too and she also is able to control her conditions. My older sister takes medication for her and they come back as soon as she stops them. I did medications too. I have been on medication since I was 13. It never helped (for long). I am so happy I started to react to them and started an alternative route. So glad for this board too as I see so many others have been helped by modifying their diet alone. It keeps me inspired and makes me feel like I am not crazy, lol. Good luck and I hope you get things figured out. BTW, all the conditions I listed - full remission! A coincidence according to my GP and Rheumatologist. I wish they were interested in tracking because when I cheat (over a period of 2-3 weeks) everything slowly comes back.

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Good luck with the gluten-free diet. Be sure to give it a few months; I'm still noticing improvements after 6 months, and things like my migraines took a few weeks to go away.

I would like to encourage you to get the full thyroid testing done too. Your symptoms scream hypothyroid.

I am hypothyroid, but my TPO Ab was "normal"... it was 33.8 and the range was 0-34. LOL It is fairly common for TPO Ab to fluctuate, and to drop off a bunch once the thyroid is almost, well... dead. Don't trust a "normal test" statement without seeing your actual results and consulting sources other than your doctor's "say-so".

Consider testing:

TSH (should be close to a 1)

Free T4 and Free T3 (should be at 50-75% of the normal reference range)

TPO Ab (should be almost non-existant)

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thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]

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thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]

We know how it feels :)

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Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --
THIS IS IMPORTANT
- it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.

It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

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In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.

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In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.

thank you for that suggestion!! after looking into it though i dont think CRPS/RSD fit my symptoms. my guess is the same as yours when it comes to the temp changes with anemia. ive been gluten-free for about 2 weeks now and the only thing that has really improved is my digestion. my stool is more solid now (used to have craZy diarrhea nearly every time i ate). thats a pretty good improvement, right??

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i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

I assume you've talked about these labs with a doctor??

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i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

what is the number on the TSH? saying normal is not good enough.
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i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

Would you be able to post the values of your test results, not just whether they were "normal"?

I am curious as to why your doctor checked your thyroglobulin...that is generally done when looking at hyperthyroid people. The total T3 value isn't much use either, you need to know what your FREE T3 level is...the unbound hormone is the only one your cells can use. Though, if your TOTAL is low, it is guaranteed your FREE is low as well since the free hormone is only a fraction of the total.

You might beg for an entirely new set of thyroid labs, which should include:

Free T3

Free T4

Anti-Thyroid Peroxidase Antibodies (anti-TPO)

TSH

REVERSE T3

So...I'd say you better be getting with a good doc (and not necessarily and endocrinologist) to discuss this stuff, because on the surface of everything your thyroid isn't serving you well even if your T4 looks normal. The actual levels would help with better understanding. It would appear that you might not be converting your T4 to T3.

That is how thyroid function works...the pituitary stimulates the thyroid with TSH (thyroid stimulating hormone). The thyroid should respond by making thyroid hormone, the bulk of it in the form of T4. As the body needs it, the T4 is converted to T3, some bound to carrier proteins (thyroglobulin) and some not. The cells have receptors that recognize the hormone, and pick up as much of the FREE T3 as they need in order to carry out their metabolic functions.

With low T3, you are functionally hypothyroid and WILL have thyroid symptoms. But you will need a lot of tenacity and good luck to get a doc to look beyond your TSH and T4. Thyroid is VERY badly treated by most mainstream medical professionals.

Also, though your T3 and thyroglobulin levels are off, it doesn't necessarily mean the thyroid itself is failing...it could also be pituitary. I don't want to scare you because your elevation is so slight, but increased thyroglobulin can be an indicator of a thyroid cancer though if there is a disease going on, it would still more likely be Hashi's/Graves or other form of thyroiditis. You can poke around labtestsonline.org to read about individual tests.

Is it acceptable to post links to other sites? The thyroid forums at about.com and at Delphi.com start have some wonderful, friendly people who have lots of experience and can offer plenty of support and guidance. There are some thyroid-savvy people here too, just don't know if they'll find their way to this topic!

Bottom line, you have symptoms that are explainable by even this sketchy lab report and you need someone who can better investigate this for you.

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    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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