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I'm New And Confused – Should I Get Tested For Intolerance?


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#1 huppa76

 
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Posted 26 February 2013 - 04:44 PM

Hey everyone, 

 

I'm sure there's been alot of the same question on this board from newbies, but I hope someone is reading. 

 

I recently decided to give up wheat/grains for a week to see if it would help me lose weight. It did btw, although I also cut sugar. On day 2 I had a pretty bad headache and felt almost flu-ey. I took painkillers and assumed it was withdrawal from sugar. 

 

By day four I felt AMAZING. Better than I can remember feeling in a long, long time. I had never cut wheat completely out of my diet before and suspected that was it. I had heard about gluten intolerance ofcourse but never in a million years did I think I might have issues with, it but now I'm not so sure. 

 

Some background, Im 37yo, I've been overweigth since age 7, when I started piling on weight despite a pretty wholesome, home-cooked diet. I did have a huge apetite for food though and was teased about it by my family - I was always hungry. I'd feel hungry so soon after eating that there was no way I was actually hungry lol... I had alot of headaches as a kid too. Migranes, where all sound and light and smell caused excruciating, throbbing pain. I got pretty severe period pain as a teenager, near passing out, unable to function, I would have diahhrea and vomit. 

 

This has followed me all my life. Overweight, feeling tired all the time, I never wake up feeling rested and full of energy, no matter how much sleep I get, I'm always tired, so tired theres always a dull ache. Most days I feel like my head is stuffed with cotton, I just can't seem to "wake up", I feel very groggy usually until after lunch time and be very tired again at 4pm.
I have night sweats where I wake up completely soaking, also wake up frequently feeling dizzy. I'll have 'fits', usually in the evening where I feel really hot and really irritated (my sister teases me that i've going through menopause since I was 20!) I'm on and off anti-depressants, diagnosed with clinical anxiety, I have aches in my knees, calves and elbows. I've acne along my jawline since early 20-something. (magnesium&vitB seem to help that). 

 

I've always blamed my being overweight for all my complaints and just berate myself for being lazy and greedy and not being able to control my cravings. 

 

Lately I feel like the headaches and migraines are getting more frequent over the last year or and worryingly frequent diahhrea too, which starts with very painful cramps, similar to bad period cramps. I break out in cold sweat and feel weak and faint. This is then followed by much rumbling and what I can only describe as 'peeing through the wrong opening'! I'll feel tired afterwards and very thirsty. I have noticed that this happens during the weekends more and actually I do tend to eat more bread on weekends.

 

Anyway, back to cutting the wheat out. On day 4 I felt amazing, I couldn't believe it. My stomach was 'quiet'... not constantly rumbling, constantly gassy and bloated and I felt awake and happy! On day 6 I had spagetti. The following morning I woke up with cramps and diahhrea. I cut out wheat again and felt great again. Everytime I go back to it now it seems I feel worse every time?  I had pizza and two beers last saturday night and I felt completely exhausted the day after, headache and body aches, heart was pounding, felt i couldnt breathe deep enough and I now have an acne-covered jawline, the biggest breakout I've ever had btw. 

 

So my question is; does this sound like celiac or sensitivity or intolerance?

I'm a bit confused about which is which, but I should I get tested for it just to be safe, right?

 

Thanks so much for reading, 

love & light

 


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#2 Takala

 
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Posted 26 February 2013 - 08:05 PM

There is gluten intolerance, which is a reaction to the proteins in wheat, rye and barley family of grains. 

 

Then there is Celiac disease, which is an auto immune reaction caused by very serious gluten intolerance to the proteins in wheat, rye and barley family of grains.  This auto immune reaction causes slow destruction of the lining integrity of the small intestine, which causes the gut to "leak" the slightly undigested food in to the bloodstream, where it really does NOT belong, and it then stimulates the production of antibodies.  The auto immune reaction causes a combination of malnutrition and havoc with certain organs and glands, giving rise to many different symptoms.  Celiac can also be diagnosed by medical tests of the blood looking for those antibodies,  and looking at and taking biopsies of the lining of the small intestine near where it meets the end of the stomach. 

 

Gluten intolerance has no formal test at this time, other than one can eliminate gluten from the diet and then see how one reacts to this.

 

One must be eating gluten to get a positive celiac test.  That is why it is good (and recommended)  to get tested to the max that one can put up with, before going on a gluten free diet.  Even if one then tests negative for celiac disease, that does not mean that they are not gluten intolerant and that a gluten free diet might not help their symptoms.   

 

So you would want to be tested for celiac first, then, if still not officially celiac, test the gluten free diet out to see if it is gluten intolerance. If you go off of gluten, then resume eating it after a period of time, and have a noticeably worse reaction, that is a hint that you definitely have a "gluten problem," whether or not it is officially celiac.  Normal people do not have this reaction, they can take it or leave it. 


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#3 guest134

 
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Posted 27 February 2013 - 05:46 AM

Takala, I have never heard of Celiac causing undigested food to leak into your blood, can you link me to where you heard this?

 


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#4 huppa76

 
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Posted 27 February 2013 - 10:09 AM

Hi Takala, 

 

Thanks for the information. I think I'm slowly getting the difference...

Will get myself tested. Let's hope it isnt celiac.


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#5 huppa76

 
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Posted 27 February 2013 - 10:11 AM

To anyone here though, I'd like to know if what I described above sound like it might be celiac? I know no one can diagnose me over the internet, but I'm a little worried.


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#6 frieze

 
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Posted 27 February 2013 - 11:32 AM

Takala, I have never heard of Celiac causing undigested food to leak into your blood, can you link me to where you heard this?

 

that is "leaky gut".....it is on a molecular level...


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#7 mushroom

 
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Posted 27 February 2013 - 11:40 AM

To anyone here though, I'd like to know if what I described above sound like it might be celiac? I know no one can diagnose me over the internet, but I'm a little worried.

 

Most definitely.  Or it could be gluten intolerance.  The symptoms are pretty much the same, but celiac is an autoimmune reaction and at this time they don't believe that NCGI is.  For anyone who feels better not eating wheat and feels worse when eating it, it is most likely celiac or NCGI that is causing it.


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#8 huppa76

 
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Posted 21 October 2013 - 06:37 AM

Hi everyone, 

 

Just wanted to post an update – its been a few months since my original post! Thanks to everyone who replied. Better late than never, right? :)

 

I did get my blood tests but they came back with 'nothing unusual' and no signs of Celiac, but if I wanted we could look into it further we could. But I havent bothered actually.
Although I can't know for sure, I don't think I have Celiac but I believe I have gluten sensitivity – so I simply stay away from foods containing gluten and have done so since February, with exception of eating gluten foods a month prior to the blood test. 

A few days back on gluten I got all the symptoms again:

· headaches

· extremely sleepy

· gassy, upset stomach with _much_ worse odour... 

· loose stools, much worse odour - feeling of 'not being able to contain..'. Ugh.

· heartburn and acid burps 

· random body/joint aches, 'growing pains' and irritable legs esp at night

· night sweats

· elevated heart rate, noticing it esp at night when trying to go to sleep

· painful cystic acne on jaw & neck

· puffy in face and hands

& probably more things that I cant remember right now

 

Removing gluten from diet results in all of the above disappearing within a couple of days for me with exception to the joint aches.
It took about month or so for joint aches to disappear completely and they did seem to get worse before they got better. 

 

I have eaten pizza once and a couple of other breads when out for an occasion and I thought 'what the hell'. Within an hour my face feels warm and flushed. Heart rate goes up too a few hours after. Joint aches come on pretty soon actually and my stomach is unhappy for the next 24hrs or so; gas, heartburn, loose, very dark stool.

The headaches dont seem to return unless I eat gluten for a few days, thankfully.

 

Staying away from it on a daily basis isn't hard at all but on special occasions it can be challenging.  
For rare, seasonal, traditional foods that I would have once a year, I will just have a bit of it and deal with the consequences seeing as —for now at least— they aren't so severe. 

Having said that, it is making me think what gluten does in my body, causing aches and swelling in so many places. I just know I should steer clear.

 

I make my own breads sometimes, of almond meal, coconut meal. but for the most part I just do without any alternatives to bread. All the gluten-free products on the shelves don't seem to agree with me. Heartburn City... burning feeling in my stomach so I just stay away. It's nice to know that there are these alternatives as occasional treats — they are expensive and all that starch probably isnt a good idea anyway.

 

All in all, I am actually *happy* I discovered that i am sensitive to gluten. It means that so many physical problems are GONE. Things that I thought were just normal and how everyone else felt. 

I've lost some weight, although I haven't been trying at all. My appetite isn't as ravenous as before. I would get a tiny bit hungry and I would just have to EAT! NOW! or I would be nauseated and get a migraine with diahhrea. Now I feel hunger in a different way now, like a gentle reminder that it's time to fuel up rather than a screaming beast. And so I feel in better control of what I do choose to eat. Maybe its a more even blood sugar? Maybe its that when I eat gluten my body isn't getting as much nutrition, so it screams for simple sugars? Who knows.

Thanks again for your replies and I hope everyone is feeling well. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Most definitely.  Or it could be gluten intolerance.  The symptoms are pretty much the same, but celiac is an autoimmune reaction and at this time they don't believe that NCGI is.  For anyone who feels better not eating wheat and feels worse when eating it, it is most likely celiac or NCGI that is causing it.


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#9 MChase

 
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Posted 21 October 2013 - 09:41 AM

These sound exactly like my a lot of my symptoms. Im in the process of trying to get diagnosed. I can't wait until testing is over so I can get some relief.
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#10 huppa76

 
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Posted 22 October 2013 - 01:19 PM

These sound exactly like my a lot of my symptoms. Im in the process of trying to get diagnosed. I can't wait until testing is over so I can get some relief.

 

Hope you get your results soon and can go off gluten asap.. wont your doctor check your blood? 

 

Forgot to mention that mood is affected too. I don't feel "down" as often and I'm not as anxious/worried. I was diagnosed with anxiety over 10 year ago and have been on and off prozac since. I'm off it now and feel pretty good. Won't jump to any conclusions on wether this will 'heal' my mental state but so far so good.

 

Good luck MChase! :)


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#11 GFinDC

 
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Posted 24 October 2013 - 11:54 AM

Hi Huppa,

 

It sounds like you doing so much better being gluten-free!  There are threads on the board about people gaining lots of weight and having celiac disease.  It is not as unusual as you might think.  Celia disease damages the villi lining the small intestine, which impairs the ability to absorb nutrients, including vitamins and minerals.  That can make some peoples bodies think they are starving, and trigger  a craving for more food.  The body needs vitamins and minerals to heal and grow, and it can't fix that problem without eating more.  Except if you take vitamins or shots.  Big gotcha is that if you aren't absorbing the vits/mins then it make not work, and you just keep eating and getting nowhere on the problem.  When you stop eating gluten and your villi heal, you can start absorbing more nutrients.  Then your body can restock it's supply of essential vitamins and minerals.  And your food craving tapers off.

 

A couple things, you described a reaction on your jawline?  There is a condition associated with celiac disease called dermatitis herpetiformis (DH).  DH can cause blisters/itchy bumps on the skin in various parts of the body.  A diagnosis of DH is a diagnosis of celiac disease.  They test for it by taking a small skin sample next to an active lesion.  They test that sample for IgA antibodies, which collect in the skin of DH patients.

 

People with DH are more likely to have skin reactions than severe intestinal damage, at least in the early stages.  But DH can progress to cover larger areas of skin and can be hard to get rid of.  check the DH section of the forum for more info. DH is a serious problem, and you may need to be very strict with your diet to stop it.  Some people describe it as a very, very warm warm place or H.E. double toothpicks..

 

Your reactions sound pretty severe to me.  The thing is they will probably worsen over time with repeated exposure to gluten.  So it would be good to get your diagnosis figured out or just stick strictly gluten-free to prevent further progression.

 

I hope you have a great Halloween!


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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