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Sarah Elizabeth

Possible Gluten Sensitivity (New Member)

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Hello everybody, my name is Sarah and I am a nineteen year old woman from Australia.

Over the past few years I have experienced extreme fatigue (it has worsened gradually) and depression. Last year I had a brief stint on anti depressants but they stopped working for me. I went to see a pyschiatrist who advised me to give up gluten, dairy and sugar even though I had a negative result for celiac's in my blood work.

My regular DR informed me that I could still be gluten sensitive without it shopping up on the test and should therefore try an elimination diet. Initially I didn't take him seriously and did not strictly follow his advice.

Recently my fatigue has gotten to the point where I can easily sleep 12-14 hours in a session, find it difficult to wake, experience all day exhaustion and require naps. I find it difficult to drive and study. I have a very shortened attention span, my eyes and brain often feel foggy. This happens regardless of the hours I sleep, whether few, regular or many.

I have also gained fifteen kilos in the past three years but am having trouble shifting them as physical activity has become very tiring. I have days where simply climbing the stairs or breathing deeply physically hurts me. I also experience muscle pain, nausea, stomach upsets and congestion.

I was recently advised to try new medication as my mood has become unbearable however I am afraid to go back on medication and this is why I am starting to take the diet more seriously. I am now seeing a pyschologist and aim to improve my lifestyle.

I was terrified that I would have a gluten intolerance as it would be such a huge lifestyle change however I am now at the point where a gluten sensitivity would almost be a relief as it would mean most of my symptoms can be treated.

I joined this forum to find out more information and to seek support, as well as to find out if anybody out there has shared symptoms like mine and whether or not they were finally confirmed gluten sensitive/celiac.

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Welcome to the site Sarah! Yes, your symptoms sound very familiar. Depression is not unusual for people who are sick. Especially when they are lacking vitamins and minerals that the body needs to function correctly. Celiac causes damage to the villi lining the small intestine and that causes the malabsorption. If you do have celiac you need to stay strictly 100% gluten free for your intestinal villi to heal.

Has your doctor checked your vitamin levels? Celiacs sometimes have trouble absorbing Vitamins A, D, E and K, the fat soluble ones. Also iron. So that is a possible clue. Also, you can have your blood tested for antibodies to see if you are producing them. If you want to have testing done you need to stay on a full gluten diet until the tests are complete. Otherwise your body will slow down the production of the antibodies and the tests won't work. They don't work all that great to begin with for that matter. SO, you need to decide if a diagnosis is important to you or not. If it is not then just go on the gluten-free diet and stick with it strictly for 6 months and see how things go.

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Oops typos *showing up. Also psychiatrist and psychologist. Vitamin D was a bit low but apparently that is quite usual. Zinc was also low but I never ate heaps of meat. Iron was borderline. The frustrating thing is that I was already doing everything apparently right before I started getting really bad. My diet was healthy, probably better than the average person and I exercised every day. For a brief period I was able to work out moderately for up to two hours a day without feeling worse for wear. I also made an effort to sleep regular hours and up until I turned eighteen last year I barely even drank alcohol. I have now given it up. Along with removing gluten from my diet I am also limiting dairy, preservatives, sugar, caffiene and possibly red meat. At least for a while to see if it helps me get back on track. I am focusing on fruit, vegetables, soy and snacks such as trio nut bars and roasted chick peas. I am also trying to include fresh juice and green tea into my everyday diet. I am trying to get my stamina back via light to moderate exercise. I have also been researching gluten free personal care products as I don't want to risk contamination while I'm doing the elimination. I figure that it's important to be really strict now if I want to know for sure whether or not gluten is the culprit. To be honest the personal care products and cosmetics have been the most frustrating and upsetting thing. I know there are mixed opinions about the need for them but as I said, if I'm undertaking a strict regime I want to know that I'm doing it properly so that I get valid results. I'm going shopping for more products tomorrow so I basically count from July until December my trial period. However, results pending I may reintroduce my regular cosmetics after a month or so. I don't know what to expect or even what to hope for during this period. I just know that I want answers and I want my life back because I'm too young to feel this awful. In fact I have a headache right now :(

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Oh and my fathers sister was diagnosed as Celiac about a year ago. She's always had strange health issues and I'm not sure whether a dr finally tested her or if she self diagnosed. I don't know that she has been taking it as seriously as she ought to - like I said, she has a host of other health issues so it might not be rating highly on her list of concerns. Lovely lady, just funny blood. She's not immediate family obviously but I do wonder if it means that somewhere in my DNA is a predisposition for gluten sensitivity.

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Wow your psychiatrist keeps up with research, I'm impressed! There was a fairly recent journal article that advised that folks with depression who don't respond to medications should be tested for celiac as that can be the cause. Glad to hear that you are going to be following the doctors advice. Hopefully the diet will help but it can take a bit of time. There are some of us who will go through withdrawl so if you get even moodier for a couple weeks please know that is normal and that it will pass.

Your doing the right thing by going with a whole foods diet. One suggestion I would make is to eliminate dairy and do be careful with the soy as some of us do have issues with that also. You might want to eliminate them both along with the gluten at first and when you are feeling better add them back in, one at a time, three times a day for a week, and watch for any reactions. Also make sure you get a new toaster, strainer, and replace any scratched non-stick cookware or wooden utensils and cutting boards.

For toiletries many will clearly label gluten ingredients. Here Dove and Suave and Garneir are all good companies for labeling. Don't know if they are available where you are. You could do a topic in the Products section asking for safe suggestions where you are.

I hope your feeling better soon.

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They should be easily available. I'm in Victoria just outside of Melbourne. I was already going to cut out dairy at least at first, I'm just a little worried about also cutting out soy but I suppose I could take a calcium supplement. I'm already supposed to take magnesium for my muscle tension and a complete multivitamin mineral supplement. Besides, I've read mixed things about the health benefits of soy. Some studies link it to an increased incidence of breast cancer and since I'm already on the pill I sure dont need that! I wasn't sure if I need to be wary of fruit or not as I know my dr briefly considered the possibility of my having a fructose intolerance. I wouldn't be left with many options though ha ha. Since my symptoms are very similar to a number of food intolerances I guess it's possible I could have any number of issues. It's a pity, I've always thought I was allergy free but in the last few years I've started developing symptoms to cats, dust & pollens and now food too. And I was just becoming such a good cook!

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Oh I didn't even think about the cross contamination issue from the family kitchen! I'll just try to eat raw as much as possible and have my own knife, glass, plate and chopping board. Do I need to worry about what dishwashing liquid my mother uses? I have a boyfriend as well and I noticed that severe celiacs have to be careful kissing their partners. Will I need to worry about that too in order to prevent my diet from being contaminated. It's all so overwhelming but I really do need to know once and for all whether or nor I can control all my horrible symptoms with something as basic as diet. Otherwise I'll end back up on pills but they have their own range of very disheartening side effects. Never want to take them again, although at the time of initial diagnosis they saved me.

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Soy is also linked to thyroid problems - which are already common with gluten intolerance. And yes, you should never kiss a glutenoid until he has brushed his teeth :)

Hang in there, this is all doable and I sure hope that it works for you.

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Have you had your thyroid tested? Everything you listed sounds very similar to my symptoms of hypothyroidism.

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I don't think so, unless it shows up in normal blood tests. I thought there were usually other symptoms with hypothyroidism. My mum's friend had it and her neck swelled up like crazy.

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Thyroid problems can manifest themselves in a lot of ways, depending on whether you are hypo- or hyper- thyroid. Sometimes it is just being cold all the time. If you haven't had it tested I would definitely have it done. and if your thyroid is a problem I would definitely avoid soy.

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I am new to this as well. I just posted "New Here, My Journey." This might help you with some of the symptoms issues and whether you can relate. I could not do the 8 weeks on glutens to test for Celiac. I last 12 days and was so sick I had to go off. The way I found out is I had a reaction to an herb and I have since found out that herbs can make allergies to foods even worse. I was very very sick. Like you, before the herb I was always tired. Thought I had a light deprivation issue and would sleep sometimes 10-11 hours a day. My night time sleep was disrupted. Doc put me on prenatal vitamins, I tried the blue lamps, nothing helped. I thought my metabolism was low and this is how I stumbled on this herb, bad mistake. Docs were running all kinds of tests on me, I requested my labs and I saw all these low markings with minerals which docs had not explained. Was sent to Gastro and that is where I started putting this together. My body was mineral deficient and I was suffering! 24 hours off glutens once again, and the burning in my stomach has stopped. My depth perception was bad, blurred vision, terrible memory which felt like alzheimer, terrible stiff neck that wouldn't go away along with all the stomach issues. Someone I know that has Celiac told me to try Advil for the memory. This is day 3 of me taking Avil every morning with breakfast and I can tell you that my stiff neck has improved a great deal, my depth perception is back, still some blurring but better, thought processes alot clearer. She said this happens due to an inflammation and she told me all about it but would have a hard time repeating what she told me. Not knowing is one thing but I am not taking it lightly as I know how sick I have been. Take all the steps. I am currently off gluten as well as dairy.

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Have you had your thyroid tested? Everything you listed sounds very similar to my symptoms of hypothyroidism.

Oh wow, I was not aware of this....very new. This makes me think now. I have a growth on my thyroid, had origiunally been sent to endo due to high calcium reading (hypercalcemia). Doc ran tests and said it wasn't hypercalcemia but found this growth on the thyroid instead. He ran tests....thyroid function normal, antibodies normal which he then determined then as non-cancerous. I was given meds to shrink the size of the growth and I am to retest in 6 months.

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Girl, you sound just like me!

My symptoms: severe fatigue, dizziness, stomach cramps, bloat, brain fog, small patchy rashes. Celiac even explains stuff I didn't know was a symptom, like my messed up toenails (koilonychia- indicates iron deficiency) and spots on my fingernails (leukonychia - indicates zinc deficiency). I have severe anxiety as well but I do not believe it is necessarily related as I have PTSD and a strong family history of anxiety. In any case, it's well controlled by sertraline.

Of course, my blood tests were very negative.

I've been gluten free for about 2 and a half weeks. I'm pretty careful about cross contamination (we cleared out the whole house, scrubbed the kitchen, and replaced some really beat up stuff). My fiance knows to brush his teeth after he's eaten gluten, which isn't often as he doesn't eat it at home and we rarely eat out.

I do feel better. Not, "wow, I'm cured!" better. There are still times, mornings especially, that I can barely move from exhaustion. My stomach also hurts most often in the morning when I first get up. But, I am cooking and even baking again. I cleaned the house this weekend, which I hadn't done in at least a month. We stayed out late to see the fireworks last night and I was alert the whole time.

It's all baby steps, I think, and I hope I continue to feel better. I haven't found being gluten free is that difficult so I have no reason to stop now.

A little tip, that you can take or leave. I feel best when I consume a good deal of protein and some fats for breakfast. A lot of my hypoglycemic symptoms tapered off after I started having eggs, whole grain toast, and fruit in the morning instead of cinnamon chex. I skimped today because I had to be at work early and just had half a cup of yogurt and I've been feeling low all day. Bleh.

Try the gluten free. Give it a month, at least. After that, you can try a gluten challenge, reintroduce it and see if your symptoms return/worsen. That's a pretty good indicator.

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I am so thankful for all of your tips and to read that many of us are in the same boat. Minds racing, body discomfort, boggy feeling minds...etc. I looked into celiac disease over 2 years ago (i have 2 aunts, an uncle and a cousin with confirmed celiac disease). My blood tests were negative and I was told that I should look into treatment for depression, ADHD, thyroid, or just to get more sleep. I knew my symptoms were stemming from somewhere else...diet! I am going to do a very low if not totally free from gluten diet and watch the benefits grow. Does anyone have research based articles on gluten intolerance? It would be nice to show my husband some solid info.

The very odd thing is that even though I feel lousy afterwards, I CRAVE bread sometimes. I read that yeast in the body can fuel these cravings. Have any of you experienced this or heard of this?

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I so feel your story! I find that drinking emergen-c packets and daily multivitamins really improve my symptoms. Maybe people like you and I just need to cut out the gluten even if our celiac disease blood test results are negative. I am shocked to find so many people with my same symptoms, here I have known something just wasn't right but didn't know how to tie it all together.

Hello everybody, my name is Sarah and I am a nineteen year old woman from Australia.

Over the past few years I have experienced extreme fatigue (it has worsened gradually) and depression. Last year I had a brief stint on anti depressants but they stopped working for me. I went to see a pyschiatrist who advised me to give up gluten, dairy and sugar even though I had a negative result for celiac's in my blood work.

My regular DR informed me that I could still be gluten sensitive without it shopping up on the test and should therefore try an elimination diet. Initially I didn't take him seriously and did not strictly follow his advice.

Recently my fatigue has gotten to the point where I can easily sleep 12-14 hours in a session, find it difficult to wake, experience all day exhaustion and require naps. I find it difficult to drive and study. I have a very shortened attention span, my eyes and brain often feel foggy. This happens regardless of the hours I sleep, whether few, regular or many.

I have also gained fifteen kilos in the past three years but am having trouble shifting them as physical activity has become very tiring. I have days where simply climbing the stairs or breathing deeply physically hurts me. I also experience muscle pain, nausea, stomach upsets and congestion.

I was recently advised to try new medication as my mood has become unbearable however I am afraid to go back on medication and this is why I am starting to take the diet more seriously. I am now seeing a pyschologist and aim to improve my lifestyle.

I was terrified that I would have a gluten intolerance as it would be such a huge lifestyle change however I am now at the point where a gluten sensitivity would almost be a relief as it would mean most of my symptoms can be treated.

I joined this forum to find out more information and to seek support, as well as to find out if anybody out there has shared symptoms like mine and whether or not they were finally confirmed gluten sensitive/celiac.

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A persistent craving for a particular food (except perhaps during pregnancy) generally denotes something that is not good for us. :P Think of alcohol and cigarette cravings, heroin,... gluten is like that. It is addictive, acts like an opioid on the brain and makes the body want it even though it is harming us. Usually it is the bread we crave. It was sourdough french in my case. Starches and sugars do, of course, feed yeast, but the craving can be quite independent of yeast problems.

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