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Could It Be Celiacs?
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3 posts in this topic

Hello:

My name is Amanda. I'm so glad I found this site. Recently I've been going through a bought of extreme stress... Anyway, even more scarier is my health, which looking back now are issues I've had my whole life. I haven't had my period since March so of course I went to the gyno and he found a mass on my ovaries (not cancerous). However he said some of my symptoms couldn't be cause my the mass and suggested that I may have Celiacs and told me to find a good gastro. Here are my symptoms: canker soars (had my whole life) trouble gaining weight (I've had my whole life) tingling in my hands and feet, odd rashes that are extremely itchy on my elbows (I've had my whole life on and off), headaches (I've had my whole life), either I'm constipated so bad I have to take massive amounts of laxatives to go, or I have diarrhea so bad I can't stay out of the bathroom... I've always had irregular "movements" but the past few months its been so bad. I'm in my twenties and I've actually gone in my sleep and in my pants at work while I was running to the bathroom (how embarrassing). I notice the enamel on my teeth is starting to wear away a little bit, my belly is so bloated it looks like in pregnant but I can rarely release anything, when I do it is so foul I have to leave the room. I've lost 14 pounds since March. After I do go to the bathroom I'm so fatigued and exhausted all I can do is lay down for a couple hours... When I go through the spells of diarrhea I can't seem to hold any food in my system and its like water when I go and the color of clay. I'm constantly exhausted lately its awful... I either have no appetite at all or can't stop eating because I'm soooo hungry! I just feel so frail! I've never really been diagnosed with any sort of disease before besides anemia. I also am so irritable and have such bad mood swings lately, sometimes all I can do is cry and I notice I lose my patience with my daughters so much easier lately. Sometimes all I can do is cry. I am so fed up I look anorexic and like a little boy I am so skinny and I am in my mid twenties with two babies. I also get nauseated after I eat. My husband noticed a huge difference in me too, especially my weight. I might also add I have a neural tube defect in my spine (which my doc assured me is not related to these symptoms). Since he suggested Celiacs I've done a bit of research and it seems a lot of the symptoms at there... However they have come and gone my entire life it just seems very prominent now. I wanted to get some feedback from someone who actually has Celiacs Disease and see if they an relate at all and try and figure out if its possible and worth going to get tested. Please excuse all of the typos I am on my phone!

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welcome  :)

 

based on what you wrote, I think you should definitely get yourself tested!  remember for testing to be valid, you MUST continue to eat gluten until all testing is complete.  first you should request a complete celiac panel, which consists of:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you produce enough iga antibodies to validate your other iga results

 

you should be able to request this test through your PCP before you even go to the GI.  

 

check out this link:

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

 

anemia is related to celiac.

 

go get yourself tested, and remember to continue to eat gluten until ALL testing is complete.  also remember to request copies of all test results, so that you can review them too.

 

good luck!

Hello:

My name is Amanda. I'm so glad I found this site. Recently I've been going through a bought of extreme stress... Anyway, even more scarier is my health, which looking back now are issues I've had my whole life. I haven't had my period since March so of course I went to the gyno and he found a mass on my ovaries (not cancerous). However he said some of my symptoms couldn't be cause my the mass and suggested that I may have Celiacs and told me to find a good gastro. Here are my symptoms: canker soars (had my whole life) trouble gaining weight (I've had my whole life) tingling in my hands and feet, odd rashes that are extremely itchy on my elbows (I've had my whole life on and off), headaches (I've had my whole life), either I'm constipated so bad I have to take massive amounts of laxatives to go, or I have diarrhea so bad I can't stay out of the bathroom... I've always had irregular "movements" but the past few months its been so bad. I'm in my twenties and I've actually gone in my sleep and in my pants at work while I was running to the bathroom (how embarrassing). I notice the enamel on my teeth is starting to wear away a little bit, my belly is so bloated it looks like in pregnant but I can rarely release anything, when I do it is so foul I have to leave the room. I've lost 14 pounds since March. After I do go to the bathroom I'm so fatigued and exhausted all I can do is lay down for a couple hours... When I go through the spells of diarrhea I can't seem to hold any food in my system and its like water when I go and the color of clay. I'm constantly exhausted lately its awful... I either have no appetite at all or can't stop eating because I'm soooo hungry! I just feel so frail! I've never really been diagnosed with any sort of disease before besides anemia. I also am so irritable and have such bad mood swings lately, sometimes all I can do is cry and I notice I lose my patience with my daughters so much easier lately. Sometimes all I can do is cry. I am so fed up I look anorexic and like a little boy I am so skinny and I am in my mid twenties with two babies. I also get nauseated after I eat. My husband noticed a huge difference in me too, especially my weight. I might also add I have a neural tube defect in my spine (which my doc assured me is not related to these symptoms). Since he suggested Celiacs I've done a bit of research and it seems a lot of the symptoms at there... However they have come and gone my entire life it just seems very prominent now. I wanted to get some feedback from someone who actually has Celiacs Disease and see if they an relate at all and try and figure out if its possible and worth going to get tested. Please excuse all of the typos I am on my phone!

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Oh yes! Your symptoms definitely fit. They are actually quite classic symptoms. I think it wouldbe worth your while to get tested. Plus there is a genetic link to celiac so you will want to have your kids tested, and repeat the testing every few years if they continue to eat gluten.

The celiac panel is:

DGP IgA and DGP IgG

TTG IgA and tTG IgG

Total serum IgA

EMA IgA

AGA IgA and AGA IgG (these are older and less frequently used tests)

You must be eating gluten in the weeks prior to testing for an accurate test. If all tests are negative, it is possible that you have Non-Celiac Gluten Intolerance/sensitivity (NCGI) which is also treated with a gluten-free diet.

You might want to request nutrients be checked as celiacs are usually low in ferritin, iron, potassium, calcium, D and B's. Thyroid problems are in more than 1/10 celiacs too so you might want to check TSH (should be near a 1),freeT3 and free T4 (should be in the 50-75% range of your labs normal reference range), and TPO Ab.

When you go to the doctor, bring your list of symptoms and examples of how it affects your life. Everyday examples seem to help doctors understand our symptoms better.

Best wishes. I hope you find answers and feel well soon.

Edited to says "oops", P of P was faster....ditto everything she said. :)

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    • I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low. Edit: Also my blood pressure was low when my ferritin level got very low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • 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!     
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