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Sanaa

Feeling Really Unwell!

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Hello,

This is my first time posting on this forum and any help/advice and assistance will be greatly appreciated.

I was diagnosed with Celiac Disease (positive blood test and biopsy) in April 2011.

I have been gluten free for 6 months now. After 4 months of being gluten free I didn't feel GREAT. I definitely felt better (less bloated and no pain in my stomach/abdomen etc) but my stomach was still bad on a day to day basis. Some days were better than others but over all I was still struggling. I also struggle with extreme weakness, fatigue and dizziness; I experience a lot of head rushes. 2 months ago I went lactose and soy free as well, hoping that was the culprit.

About a week ago I started feeling extremely ill. More weak than usual, walking down the street was a struggle. My stomach has become really bad. I do not have diarrhoea per say, but when I DO use the bathroom it is very bad. I also started experiencing extreme pain on my LEFT side. My whole LEFT side aches and feels inflammed almost. I am also experiencing major chills and my stomach sometimes feels like its on fire. I am VERY bloated too. It feels worse than what I initially felt when I did not know I was a celiac and I have no idea what could possibly be the problem.

I went to the doctor who thought I may have the stomach flu which I really do not think is the case. No fever, no vomiting and as I said, no diarrhoea.

The weakness and dizziness is what gets me the most. I literally feel like I cannot even focus on things that are right in front of me and all I want to do is sleep.

I am 22 year old female and my weight has dropped down to 96 pounds.

I am in university as an international student and can only visit the University clinic, the doctors don't even seem to take my symptoms seriously. I am going back to the clinic on Tuesday but I was wondering if you could help me with more advice or insight I can take with me to the doctors.

Thank you so much in advance.

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Have you eliminated all sources of gluten or contamination? Medications, health and beauty products, old cutting boards, food storage containers, toothbrushes, your keyboard and mouse... Stuf where crumbs can hide?

Are you eating dairy? Some celiacs can't digest dairy until their villi heal up and come back, although some can't even have it then. Dairy can cause a lot of trouble. Lactose can cause bloating and digestive issues, and casein can cause that plus an overall general feeling of yuck.

Do you eat gluten-free equivalents of gluten foods? Like gluten-free breads, cakes, pretzels and the like? Those things are not truly free of gluten, but just have tiny amounts of it, so if you're super sensitive or eat a lot of gluten-free processed foods, it's possible you're getting enough gluten to still be reacting.

There's also a possibility you have another food intolerance (soy is a big one, but corn is another), but I tend to assume it's hidden gluten before I completely write off foods. (and I usually find some ridiculous source of gluten, too.)

I (and some others here) react to what my cats eat! They'd get canned food at night, and I'd pet them before bed, and by morning, I'd have more dh spots, and/or a rumbly angry belly. They're on gluten-free food now, and I'm back on track. But it was a learning experience.

Good luck! My only healthcare in college was campus clinics and I really sympathize. Although I suppose in hindsight, the healthcare I get with health insurance isn't much better than that was. I still get my best info from the Internet :(

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Oh one more thing! Have you had your vitamin levels checked? B12 and iron are very likely to be low with celiac, and can cause weakness and dizziness. Vitamin D is also important and often low. Are you in a position to get them checked through the clinic?

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What a coincidence that you mentioned the bit about your cat. I got a cat just about 6 months ago!! Perhaps she is the cause for my symptoms? Could they really be that strong just from petting her after she eats etc etc. I would never have even thought of her as the culprit! I will find gluten free cat food asap and see how that goes.

I will definitely ask to get my vitamin levels checked when I visit the doctor on Tuesday.

I do indeed eat a whole bunch of gluten free equivalent of gluten foods. As I am a student struggling through University, classes etc, not to mention low $$$, I have to resort to easy quick meals. I will try to lay of all those for a while as see how it goes.

I have cut out lactose and soy; i'm assuming there is a difference between lactose free and dairy free.

Sigh, this is such a discouraging disease - I if could live without eating I probably would as food is just depressing me now.

Thank you SO much for your advice and support.

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It could be Fructose malabsorption that's bothering you (i.e. apples, honey and onion to name a few). I find that eliminating all foods other than plain rice noodles for breakfast, lunch and dinner works well sometimes.

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Sanaa, the stomach issue sounds like GERD. You said you stomach felt like it was on fire. Eventhought you may have never had acid reflux issues before I would guess the acid in your stomach is causing your pain. You will need to go to steps to protect your stomach: take an antacid 30 minutes before a meal and you may have to supplement with Pepto inbetween meals, go to a low acid diet which you can find online which includes taking dairy out of your diet as dairy will tear up the stomach, no caffeine and no spice. You have to concentrate on healing and this may take awhile. I was bad like you have described here and it took me 5 months for my stomach to heal. I had to eat meat in small portions as there for awhile it seemed like it didn't want to digest. Protein is important for the healing process but you may only be able to eat 3-4 ounces a meal. I am still very careful with spice and only have ice cream occasionally now.

You mentioned you were dizzy, I am assuming this may be ataxia if it get worse after glutening. High fructose does the very same to me so you might want to be aware that this could also be something to avoid.

You mentioned your left side hurting....have you had a CT scan to look at your organs? When my stomach was a mess my spleen, gallbladder and pancreas were swollen and they caused me alot of pain. In my situation the gluten was definately poisoning my body but I was also having a reaction to an herbal supplement so check all of your products and make sure you're not taking in any gluten products in any form and I would rule out herbal supplements. It will go away, you just have to be very careful with your diet.

Your lack of concentration, strength and dizziness makes me think you might be vitamin deficient which is not uncommon for us. I looked up each of my symptoms in connection to a vitamin deficiency, started taking vits and I actually started improving. You might consider the same. We tend to be low in iron, calcium, vits d,e & B12, along with magnesium. I recently read that copper & idebenone can help with ataxia. If you decide to supplement make sure of what is in the vitamins and what to take them with. If your system is having trouble absorbing you consider supplements you can put under your tongue, some say they work better. I noticed a difference from tabs.

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