I Need Advice

[nikiann]

Hello Everyone!

I have done some research on the internet about gluten sensitivity/ Celiac , but I am unsure and was hoping to get some advice.

I am a 25/f and have had weight gain. I eat healthy, am a vegitarian, don't eat fast food or drink soda. However I am usually so exhausted to work out... no it's not the typical everyday excuse. I mean it's extreme exhaustion... mostly during the day. I have these sudden onset rushes of fatigue but have a hard time falling asleep at night. During the day I have constant headaches that interfear with my concentration. I have regular feeling of bloat and gas. I also have been having irregular periods.

I have had recent blood work and did not have irregular thyroid and I am assuming they checked for anemia because they said my blood work is normal. Oh, I will also have these strange tingles or shivers too.

Is it possible that this may be due to gluten? I wasnt sure becasue i don't have severe stomache aches.

Your advice and suggestions would be helpful!

Thank you!!

[GlutenGalAZ]

Are you taking any vitamines? If so make sure they are gluten free. If you are gluten intolerant then you body is not absorbing the nutrients it needs. My dr did some vitamin defincy type tests and found that I was low on B12 and so I take B12, B-Complex and a Multi (Nature Made labels their stuff gluten free if they are).

Everyone varies so much with their symtoms. I had really bad stomach problems, gas, bloating, really tired unable to go do things....

Once I started on with the vitamines and changed some things I got more energy. Some people are low on magnesium as well. You just need to be careful if you are going to try to figure out on your own with vitamines.

Are you drinking enough water? I notice during the summer more if I don't drink enough water I get really bad headaches.

I am sure others will post more informative info for you. I hope you figure things out and start to feel better.

I have seen some vegan and vegetarian posts on here lately, might help you some.

GOOD LUCK

[nikiann]

I am currently taking a multi everyday and carry around my water bottle so I am sure to drink enough water. I will ask my doc to check to see if I am low on vitamins. Is that a seperate test that they typically do from normal blood work?

Thanks again

[ShayFL]

Have him test your iron stores - Ferritin (which should be at least 50) and B12 + MMA. If you are taking any B12 supp. then the serum B12 will be inaccurate. You need the MMA to make sure that you have enough B12

As a former vegetarian, I can tell you that it is hard to stay healthy even if you do it perfectly. B12 and iron are usually the first to plummet. Also, many vegetarians eat A LOT of grains which are hard to digest and in fact deplete the body of nutrients. Grains have anti-nutrients (enzyme inhibitors and phytic acid) which actually prevents calcium and zinc from being utlilized.

Grains can be soaked overnight with a few tsp. of vinegar before cooking to help with this problem.

Also, a lot of vegetarians eat a lot of fruit. The human body can only process so much fructose, so this can cause bloating and D too (not just gluten).

Hope you find some answers soon.

[lizard00]

Hello Everyone!

I have done some research on the internet about gluten sensitivity/ Celiac , but I am unsure and was hoping to get some advice.

I am a 25/f and have had weight gain. I eat healthy, am a vegitarian, don't eat fast food or drink soda. However I am usually so exhausted to work out... no it's not the typical everyday excuse. I mean it's extreme exhaustion... mostly during the day. I have these sudden onset rushes of fatigue but have a hard time falling asleep at night. During the day I have constant headaches that interfear with my concentration. I have regular feeling of bloat and gas. I also have been having irregular periods.

I have had recent blood work and did not have irregular thyroid and I am assuming they checked for anemia because they said my blood work is normal. Oh, I will also have these strange tingles or shivers too.

Is it possible that this may be due to gluten? I wasnt sure becasue i don't have severe stomache aches.

Your advice and suggestions would be helpful!

Thank you!!

Hi nikiann and welcome to the forum!

The whole first paragraph pretty much was me. Except I am not a vegetarian... but I had extreme fatigue and headaches, and my periods have been irregular since they started. My GP checked me for deficiencies, including B12 and vit D, thyroid, lyme, you name it. In the end it really was gluten that was causing all my problems. I never had horrible stomach pains or horrible D, but looking back I was nauseous an awful lot and I felt sick after almost every meal.

I eliminated gluten on my own, which made it really tough to find someone to take me seriously. So, if you want to be tested for Celiac, then do it now before you cut it out of your diet. The tests can be inaccurate though, so it may be worth your time to try it even it your tests come back negative.

Gluten intolerance/Celiac is a multisystem disease. It is true that it is a GI disease, but it can screw up any and all of your body systems. Once I cut out gluten, I felt better almost immediately. The fatigue stayed for a while, but I found that taking B12 supplements really helped to boost my energy, although I really feel like giving my body the rest it needed was the biggest solution. My GP told me to keep working out despite being tired because it would make it worse. Whether it helped or not, I don't know. But my mind felt better.

I went gluten-free in Nov of 2007 and immediately my periods became normal and the nausea cleared up pretty quickly. It wasn't around April or May though, that the fatigue finally faded away. Keep working at it, you'll find the answer.

Liz

[nikiann]

Have him test your iron stores - Ferritin (which should be at least 50) and B12 + MMA. If you are taking any B12 supp. then the serum B12 will be inaccurate. You need the MMA to make sure that you have enough B12

As a former vegetarian, I can tell you that it is hard to stay healthy even if you do it perfectly. B12 and iron are usually the first to plummet. Also, many vegetarians eat A LOT of grains which are hard to digest and in fact deplete the body of nutrients. Grains have anti-nutrients (enzyme inhibitors and phytic acid) which actually prevents calcium and zinc from being utlilized.

Grains can be soaked overnight with a few tsp. of vinegar before cooking to help with this problem.

Also, a lot of vegetarians eat a lot of fruit. The human body can only process so much fructose, so this can cause bloating and D too (not just gluten).

Hope you find some answers soon.

ok, thanks. I do eat a lot of friut, more so than veggies. So maybe that would explain the bloat.. but i don't really have D. Oh I also eat fish so i'm not a strict vegitarian. I also hate eggs, so i should definatly check back with my doctor about iron levels since i know iron is in meat and eggs.

[ShayFL]

Fruit will "bloat" me if I am not careful. Small amounts are fine. But a big fruit salad and I look pregnant.

[nikiann]

Hi nikiann and welcome to the forum!

The whole first paragraph pretty much was me. Except I am not a vegetarian... but I had extreme fatigue and headaches, and my periods have been irregular since they started. My GP checked me for deficiencies, including B12 and vit D, thyroid, lyme, you name it. In the end it really was gluten that was causing all my problems. I never had horrible stomach pains or horrible D, but looking back I was nauseous an awful lot and I felt sick after almost every meal.

I eliminated gluten on my own, which made it really tough to find someone to take me seriously. So, if you want to be tested for Celiac, then do it now before you cut it out of your diet. The tests can be inaccurate though, so it may be worth your time to try it even it your tests come back negative.

Gluten intolerance/Celiac is a multisystem disease. It is true that it is a GI disease, but it can screw up any and all of your body systems. Once I cut out gluten, I felt better almost immediately. The fatigue stayed for a while, but I found that taking B12 supplements really helped to boost my energy, although I really feel like giving my body the rest it needed was the biggest solution. My GP told me to keep working out despite being tired because it would make it worse. Whether it helped or not, I don't know. But my mind felt better.

I went gluten-free in Nov of 2007 and immediately my periods became normal and the nausea cleared up pretty quickly. It wasn't around April or May though, that the fatigue finally faded away. Keep working at it, you'll find the answer.

Liz

I do find myself nauseous a lot. I couldnt figure out why I was. I also get a dry weird taste in my mouth at times. I need to start keeping a log to see when these times accure. It is the strangest feeling. I will drink and drink and drink water but the taste wont go away.

Does a person with a gluten intollerance usually have it their entire life? I guess thats where I am confused becasue I can only place the nausea, dry mouth and fatigue back a couple of years, but latley the fatigue in out of controll. I just got done working out and drank so much water just to try and keep the headaches away and stay focused.

Thanks for your help!

[aikiducky]

I do find myself nauseous a lot. I couldnt figure out why I was. I also get a dry weird taste in my mouth at times. I need to start keeping a log to see when these times accure. It is the strangest feeling. I will drink and drink and drink water but the taste wont go away.

Does a person with a gluten intollerance usually have it their entire life?

How much water do you drink in a day? Drinking too much water can actually also be harmful. The best thing to do is to only drink when you're genuinely thirsty, not to habitually sip water all the time.

Celiac can be triggered at any time in your life, so you don't have to have had the symptoms all your life. What happens is you are born with the genetic disposition to it, but in some people it never gets triggered and they never develop celiac, in other people it gets triggered at some point in their life.

Pauliina

[BelievinMiracles]

Mine first started 2 years ago after a Mono incident and since then I never felt good and never wanted to do anything. So yeah you don't always have it but once you get it, it doesn't go away unless you take gluten out. Good luck.

[nikiann]

How much water do you drink in a day? Drinking too much water can actually also be harmful. The best thing to do is to only drink when you're genuinely thirsty, not to habitually sip water all the time.

Celiac can be triggered at any time in your life, so you don't have to have had the symptoms all your life. What happens is you are born with the genetic disposition to it, but in some people it never gets triggered and they never develop celiac, in other people it gets triggered at some point in their life.

Pauliina

I drink about 3 Nalgenes. It's always been a habit since I grew up at a ski area in a high elevation. But when I get that dry/weird taste in my mouth i tend to drink a lot at once becasue I have not been sure why i have had a headache paired with that taste. I assumed maybe I was dehydrated and thats why I was having a headache.

I went and got a few glueten free things at Whole Foods to give it a try to see if I feel better. I can't believe there is wheat in all that "mock" meat stuff from Morning Star, Boca & Quorn. I guess if it is gluten that is making me feel like this I will have to eat some meat.. I don't know if I could do no wheat and no meat.. geesh.

[nikiann]

ok, just for my clarification.... I know celiac is more severe that wheat intollerance, but would i be feeling worse than I am if it were celiac?

Are there definate symptoms or can they be all over the place??

[Aleshia]

a lot of people don't get the "classic" symptoms. it can affect you in a lot of different ways. maybe you should get a blood test for the celiac panel

[lizard00]

ok, just for my clarification.... I know celiac is more severe that wheat intollerance, but would i be feeling worse than I am if it were celiac?

Are there definate symptoms or can they be all over the place??

Ok...so there's a whole school of thought that Gluten Intolerance is pre-Celiac. That's not really been proven at this point, however. But the experts DO know that you can be non-Celiac gluten sensitive, in which case the gluten isn't causing an autoimmune rxn, but you can physically feel just as bad as someone diagnosed with Celiac.

And symptoms can be anything... I believe the current running list is somewhere around 250 symptoms. Someone correct me if I'm wrong. But celiac disease is now said to be a great masquerader; manifesting itself as migraines in one person, and chronic knee pain in another.

[ShayFL]

The weird taste in your mouth can be an "aura" for a migraine. That you mention the headache afterwards leads me to think "migraine". "Auras" can be sparkly lights in your field of vision, sounds in your ears, tastes in your mouth or other nerve sensations.

* visual symptoms: flashing lights, wavy lines, spots, partial loss of sight, blurry vision

* olfactory hallucinations (smelling odors that aren't there)

* unusual taste and/or oral sensations

* tingling or numbness of the face or extremities on the side where the headache develops.

* difficult finding words and/or speaking

* confusion

* vertigo

* partial paralysis

* auditory hallucinations

* decrease in or loss of hearing

* reduced sensation

* hypersensitivity to feel and touch

[nikiann]

Hey guys! So I first posted about a montha ago I believe. Boy do I have a story.

I went to see my doctor, well a new doctor since my old one left.. but I told him all of my symptoms and he treated me like I was making it all up becasue i had some chest sensitivity at the time as well. Quick history- my old doctor met me right after my dad had died and went prescription happy putting me on Celexa the first time we met, well any way I only had met with her 3x and she had mentioned that maybe I have anxiety. Well anyway i saw a therapist, he said that that was wrong and took me right off the drugs. But this is still on my chart. So this new doc skimmed my chart and said to me "Sometimes when people come to the docotr and relize that nothing is wrong with them their symptoms go away. I have this underlying sensation this is all anxiety related." I was so PISSED.. he did draw boold and I left there literally in tears for him treating me like that.

So, I went back yesterday told him he pre-judged me and he apologized BUT I tested positive for celiac.

It was 18.. I know the "maybe" range is 11-17 right?

So my question to you guys is... what does that number mean as far as severity? Is it higher the more severe. He didnt really explain it to me. Just said to see a dietician and cut out wheat.

What do you guys think? And in the past 3 weeks I have been feeling twice as worse. Now actuall more bloating and super, super extreme fatigue.. sometimes i can barley wake up and want to sleep all day.. but my dog won't allow it

[nikiann]

And my c-reactive protein is high as well. Again my doctor didnt really go over that. He said that means there is an inflamation somewhere, possibly a virus.

Your takes?

[ShayFL]

It all means your doctor is incompetent and you should ask for a referral to a GI doctor and get an endoscopy. Keep eating GLUTEN and wheat until you get the scope!!

Or if a positive blood test is enough for you, go 100% gluten free.

The inflamation is likely in your intestines!!!

Dont get me started on doctors......

[nikiann]

ok.. so I have noidea how to read this blood work.. my doctor did a terrible job of explaining it to me.

TTG is normal

But the IGA (gliadin) is what is abnormal

???

[chaddwell]

Glad you at least got some what of an answer! Hopefully you can start healing. I'm not sure about if the higher the number the more severe. I thought that the Gliadin was checked to see how you are responding to a gluten free diet. I know for the lab I've used (Quest) their range is <3 for a negative result.

What lab do you use? Not all labs use the same reference ranges.

In my mind Celiac is Celiac. Everyone experiences their own set of symptoms.

[chelby]

I will just add my question here. My mother and daughter both have celiac and I was having some of the symptons off and on So my doctor tested me and this is what came of it

IGA was a week positive

IGG negative

Endomysial ABS,Serum negative

My doc said that it was negative for celica but she doesn't know what to make of the IGA that is a week positive. She said that if the symptons keep coming back she can send me to a GI.

[gfpaperdoll]

I am no expert on blood tests, but I do know that it is like being pregnant - you either or or you are not - unfortunately there are no degrees based on the numbers - really a person with low numbers can be sicker & have more damage than a person with high numbers. - test numbers really do not mean much.

Dietary trial is the real diagnosis.

It is almost nil, IMO, that a person that has a mother & a daughter with celiac does not have a gluten problem. especially if you have symptoms. Welcome to the group.

To the original poster, please do not assume, always get a copy of all tests. & yes, you definitely need a full workup blood test - for iron, all other minerals & vitamins. & get a copy of the results & look at them & keep the copy in a file to compare to the next time you have blood work done.