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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Do These Symptoms Mean?
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CGally81    1

Okay, after I took fish oil and suffered nasty problems like pressure in the head and random inability to focus and fatigue, I stopped taking it. And my hunger shot up really high.

Since, I've been having the following problems randomly, as my hunger SLOWLY gets back to normal. (I am now taking L-glutamine daily, having started less than 3 weeks ago, since I never did really treat the underlying leaky gut that likely caused my gluten/casein intolerance in the first place)

Anyway, the list of wonder:

* random warmth in the head, particularly forehead

* sometimes random warmth on the back of the neck

* random fatigue, which can go away within an hour at times

* random headaches (not as common as it was before)

* feeling "shaky" in the hands. They're not actually shaking, but they feel kinda shaky. Hard to explain unless you've felt it

* random mild dizziness and/or reduced balance (I never actually got truly off balance, but it's definitely noticeable when it happens)

* random difficulty focusing (goes away eventually)

Some other stuff that's difficult to describe.

Oh yeah, and this is probably important: the symptoms sometimes increase before I have to use the bathroom (number 2, not number 1), then I do, and symptoms often decrease some time after that.

My doctor referred me to a neurologist and I got an EEG and MRI. I haven't gotten results back yet. If they find nothing, then what do I search for next? I considered Candida overgrowth, which the lady at the local GNC said she suffered from, but my doctor blew me off and said "Candida is a fungus. It doesn't cause problems like that. There are no tests for Candida." Considering blood tests and stool tests for Candida exist, he's an idiot.

Anyway, what might these be symptoms of? Just leaky gut, and I should keep taking my L-glutamine (I will anyway) until it goes away? Or something more?

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lucia    54

These are the kind of symptoms that I've found it's hard for Western medicine to deal with, but which are very important for Traditional Chinese Medicine practitioners to make a diagnosis. I know that's not very helpful, but I was frustrated myself trying to describe my symptoms to an M.D. even one who specializes in celiac.

I have found relief through acupuncture. My acupuncturist understands what is going on with my body even if her way of framing it doesn't make any sense to a Western doctor. I hope that you find the cause of your distress, but if not keep holistic medicines in mind.

Best, Lucia

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sickchick    3

I was digagnosed with systemic candida in 2003. I did the diet, and took all the anti-fungals, and got really sick, but it took about 2 years to start to clear up. I still take probiotics, and after I was diagnosed with celiac disease (2007) my digestive issues cleared up.

Have you ever had your thyroid tested?

Hang in there, Sweetie!! B)

lovelove,

sickchick

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CGally81    1

From blood tests, thyroid is fine.

I am strongly thinking candida is it. There's a holistic doctor 10 minutes from where I live. My idiot regular doctor thinks candida can't cause these symptoms, so if it happens to be that, I can't get any help from him. What else do holistic doctors do? What do they check for, and what kinds of tests do they do? Do regular doctors take them seriously?

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Marilyn R    239

Are the shaky hands like a pins and needles sensation? Do you get that sensation on your feet, especially at night? You might want to take look at eliminating soy, I'm not sure. Good luck in your endeavor to find out what's ailing you.

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CGally81    1

No, not pins and needles. It's hard to explain. I associate it with hunger, and referred to it as feeling "hungry in the hands", but it's really hard to describe. It might not be hunger-related.

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sickchick    3

I avoid Md's as much as possible.

I have been seeing an ND since 1997.

Good luck, again, Doll! B)

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SoyBoy    6

Items 3-7 sound familiar to me.

I borrowed a blood glucose meter from a diabetic friend for a couple weeks. I noticed that when my blood sugar levels were low, I would get 1. shaky hands 2. fatigue 3. headaches 4. difficulty focusing

The hunger symptoms you describe also sound familiar.

I would get a whole other set of symptoms when my blood sugar went too high. The bottom line is that for a period of 6 months or so, I had poor glucose control.

Things are better now (although my body does give me reminders now and then to keep me in line). How did things improve? I tried to eat like a diabetic, excercised as much as I can, and took my vitamins (B12, B-complex, multivitamin)religiously. Above all, I avoided my nemesis - soy. I understand that the solution might not be that simple for most.

What does your doctor think of the L-glutamine? How do you react if you were to eat something with MSG?

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VioletBlue    8

I second what SoyBoy is saying. To me, your symtoms sound like what I experience when my blood sugar dips. HYPOglycemia seems to plauge people with celiac disease for some reason. It can also be made worse by consuming large amounts of carbs in one setting, or snacking on carbs.

Items 3-7 sound familiar to me.

I borrowed a blood glucose meter from a diabetic friend for a couple weeks. I noticed that when my blood sugar levels were low, I would get 1. shaky hands 2. fatigue 3. headaches 4. difficulty focusing

The hunger symptoms you describe also sound familiar.

I would get a whole other set of symptoms when my blood sugar went too high. The bottom line is that for a period of 6 months or so, I had poor glucose control.

Things are better now (although my body does give me reminders now and then to keep me in line). How did things improve? I tried to eat like a diabetic, excercised as much as I can, and took my vitamins (B12, B-complex, multivitamin)religiously. Above all, I avoided my nemesis - soy. I understand that the solution might not be that simple for most.

What does your doctor think of the L-glutamine? How do you react if you were to eat something with MSG?

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CGally81    1

It's not quite the same though. My hands don't actually shake. They just have a weird "feeling" to them. And the difficulty focusing comes on and goes randomly. There doesn't seem to be a relationship to eating carbs, and I don't eat soy. The fatigue and headaches don't occur together either. These symptoms occur at different times, not usually together, and appear to come on somewhat randomly.

I'm going to try eating foods that are known to kill candida and see if I have a reaction of any kind. The day after having almond milk (which is said to kill candida), I had kind of mild symptoms of a somewhat different sort, that I thought might be candida die-off.

I'm going to try to get ahold of a holistic doctor in my area to see what I can find. My EEG and MRI came back normal, unsurprisingly. My doctor doesn't believe in candida overgrowth. I say it can't hurt to rule it out, but he honestly thinks there are no tests for it, and to "not believe what you read on the internet", despite the fact that reading what I find on the internet is how I found out I'm gluten and casein intolerant and began to feel better after cutting them out of my life. This weekend, I might go to the local GNC and see what's there, or see if I can buy stuff at Whole Foods that can help, like maybe coconut water and other stuff that kills candida, even if slowly.

Anyone here deal with candida? Even in a mild or moderate form?

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CGally81    1

Also, it can't be a coincidence that taking a dump often reduces the symptoms, but I sometimes feel an increase for some time before I have to (especially if it's a big one). All the more reason that I believe I'm removing something from my body when I do.

One example: The "shakiness in hands" feeling sometimes increases about an hour or so before I have to use the bathroom, then when I do, in a major way, it's gone. That happened this morning.

So there's probably a relationship there. I think I'm getting something out of my body.

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mommyto3    10

I have to say that your symptoms sound exactly like what I get with hypoglycemia. The whole system kind of goes haywire so maybe that accounts for the bathroom part of it?

Good Luck :)

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CGally81    1

It gets more complicated though. My symptoms have been slowly, but surely, getting better over the weeks.

And this happened both the times I cut gluten out as well as dairy. Feel terrible but gradually feel better over the months.

Plus, I get stomach rumbles a lot, which have - slowly - been getting better. Hypoglycemia is not stomach-related as far as I know. And if it were, it still wouldn't explain why I'm slowly getting better.

I want to get better permanently though. I'm tired of feeling good, then I make a dietary change and weird stuff happens. I'm taking L-glutamine every day (have been doing so for a few weeks) to try to repair the leaky gut I most likely have as a celiac sufferer, and am planning to look into things to help with candida just in case. Like garlic, which is said to help tremendously.

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SoyBoy    6

I don't want to belabor the point, but...

If one were to have hypoglycemia due to celiac / digestion related issues, it would make sense that your condition would improved gradually after correcting your diet.

If one were to have a rumbling stomach, I would guess...1) that person is hungry and needs to eat 2) that person is having trouble digesting food (ie. has celiac) 3) that person has a naturally rumbly tummy (like winnie the pooh or my father-in-law :D ).

Since your rumbling is getting better, would it be safe to guess that you're in category 2 or 1, and that you have corrected the sittuation? Either way, a rumbling stomach together with hypoglycemia would make sense. Hungry ---> rumbling stomach & low blood sugar...OR...Poor digestion / absorption of vitamins ---> rumbling stomach & low blood sugar and poor glucose control.

Just some thoughts. Best of luck.

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Lizking531    0

Also, it can't be a coincidence that taking a dump often reduces the symptoms, but I sometimes feel an increase for some time before I have to (especially if it's a big one). All the more reason that I believe I'm removing something from my body when I do.

One example: The "shakiness in hands" feeling sometimes increases about an hour or so before I have to use the bathroom, then when I do, in a major way, it's gone. That happened this morning.

So there's probably a relationship there. I think I'm getting something out of my body.

Oh man - that sounds familiar. i don't get the shaky hands feeling, but it will feel like I have the flu or just totally horrible nauseous (sp?) dizzy, lightheaded, etc. - It will even force me to sit down & re group. Sooner or later though, I'll have to fart so bad, but then everything feels sooooo much better afterwards.

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CGally81    1

Wow, did I really start this topic 2 weeks ago? Because in the past few days, I wouldn't get that nasty headache before having to use the bathroom. It's been getting better quickly! In fact, a perfect example is today. After barely using the bathroom the past 2 days, today I had to use it real bad... and yet I didn't have any nasty headache or real bad physical symptoms before I did, that went away after I did. (I did, however, still have the rise in hunger that sometimes accompanies big bathroom uses, but then again, I also had a light dinner anyway).

If you want to know what I'm doing differently (in case anyone reading this has similar symptoms and wants to tackle them directly without waiting for a doctor), I'm taking L-glutamine every day, cutting back on sugar (I temporarily stopped eating bananas, for instance, because even fruit sugar counts as sugar), adding cultured coconut milk (which contains probiotics) to my diet, and also taking a powerful natural antifungal. I'd been taking garlic tablets for the past 5 days, and today I started on grapefruit seed extract instead.

So whatever is causing these problems is reducing. It might be candida or something else, but I might well be attacking it. Let's hope it goes away, and for good.

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