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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Severe Weakness/ Fatigue Episodes, Dizziness, Brain Fluttering Sensation, Etc...
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39 posts in this topic

I have been gluten free since Feb 2012.  Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted.  To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease.  Now I'm not sure.  The dr.s have no clue and I believe they are ready to send me for a psych consult.  The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it.  My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time.  I have been doing better since the Fasano diet, but these things have stood out glaringly.

I have persisting dizziness and lightheadedness.  Fatigue is severe.  I wake up fine, and do as much as I can before I am a waste case for the rest of the day.  That is between 6-9 am... and then I am exhausted for the rest of the day.  If I rest, I can get a little energy back and it is gone quickly

I feel like a cell phone that can't hold a charge.  I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation.  My face goes grey, my eyes are sunken.  I need assistance getting into a chair.  It takes a few hours before this passes.  I feel like I am trapped in my body.  Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain.  It is very concerning. However, the neurologist has never heard of this before.  (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!)  When these episodes pass, they leave me exhausted for hours to days.   

Please can someone advise if they have had some of the same symptoms?  

My ANA is high, 640   My ttg is around 29.  I live in 100% gluten free house.  Including all of my beauty products.  

 

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i read the title to your thread and said, yes, yes and yes.  i have all those things today (and for another week probably )  because i got cross contaminated from a restaurant on tuesday (and ate my boxed leftovers on wednesday - i don't get obvious symptoms until a few days later)  relating to your celiac, that is how i feel when i have gotten glutened.  is it possible you are getting cc'd somewhere? 

 

or maybe a different problem altogether, but i am not a doctor.  that is just my experience relating to gluten reaction.  and it lasts for a wonderful 2 weeks until the fog lifts....  so even if yours maybe lasts for that long, you might not put it together if it's something you're only doing (say, for me, once every 2 weeks - which i just did :(  )  good luck :)

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I experience something similar. It feels almost like an internal tremor. Very hard to describe and very scary. I wish I had some advice to offer. :(  

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((HUGS)) :(

How is your thyroid? Hypothyroidism can slow one's metabolism by over 15% (I believe that was the number I read but I can't for the life of me find the reference). I was hypo for 15 years, during which time I felt slow, tired easily and tended to consume caffeine and extra calories in a bid to boost my energy levels... it didn't work. 

 

If you want your thyroid checked, I think the best tests are: TSH (should probably be near a 1), Free T4 and Free T3 (should be in the 50-75% range of your lab's reference range), and TPO Ab.

 

How is your blood pressure? When mine drops (like when I move to a standing position quickly) I feel shaky, grey and light headed. Could that be it?

 

Hypogylcemia can give me the shakes and make me weak too; that has improved with cutting carbs and gluten.

 

What is your tTG reference range? I would guess 29 is still high. If so then your recovery is very slow, or you are being glutened... somewhere.

 

Best wishes. I hope you find an answer.

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The "Fasano diet"  as I understand it is prescribed when people are not responding to a "typical"

G F diet (for a variety of reasons)

and it means whole foods, no packaged gluten-free items and eating out is a no-no because there is no way to control CC.

 

However, you report "3 accidental exposures". IMHO, those are the likely culprits, hon.

 

You live in a 100% G F house, so where is the exposure coming from?

 

That is probably causing these symptoms, because I had the same ones before I was G F.

 

It's not psychosomatic. No one makes up this sensation.

 

I always go with the obvious culprit before trying to sort out the other potential causes.

 

P S Are you the same Joy I "met" on GD's site? just curious.

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i read the title to your thread and said, yes, yes and yes.  i have all those things today (and for another week probably )  because i got cross contaminated from a restaurant on tuesday (and ate my boxed leftovers on wednesday - i don't get obvious symptoms until a few days later)  relating to your celiac, that is how i feel when i have gotten glutened.  is it possible you are getting cc'd somewhere? 

 

or maybe a different problem altogether, but i am not a doctor.  that is just my experience relating to gluten reaction.  and it lasts for a wonderful 2 weeks until the fog lifts....  so even if yours maybe lasts for that long, you might not put it together if it's something you're only doing (say, for me, once every 2 weeks - which i just did :(  )  good luck :)

Hi Arlene,

These things definately were present and worse at the time of a gluten reaction.  But they continue when there is no gluten reaction.  My gluten reactions are pretty severe and last approx 5 weeks.  I haven't had one for a while.  That's not to say that there couldn't be traces that get through in a restaurant here and there, but I don't really go to them as much anymore at all.  

Since the super restrictive diet, lots of things have calmed, some things seem to be getting worse or standing out....These are the things.  So I wonder, could it be ongoing damage that hasnt healed yet? Or is it something else.  If it's something else.  I have exhausted the drs. in this city.

It is nice to hear that you feel these things too.  Do you feel the vibrating/ fluttering sensation in your brain?

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I experience something similar. It feels almost like an internal tremor. Very hard to describe and very scary. I wish I had some advice to offer. :(  

SkyBlue, have you felt in inside your head?

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((HUGS)) :(

How is your thyroid? Hypothyroidism can slow one's metabolism by over 15% (I believe that was the number I read but I can't for the life of me find the reference). I was hypo for 15 years, during which time I felt slow, tired easily and tended to consume caffeine and extra calories in a bid to boost my energy levels... it didn't work. 

 

If you want your thyroid checked, I think the best tests are: TSH (should probably be near a 1), Free T4 and Free T3 (should be in the 50-75% range of your lab's reference range), and TPO Ab.

 

How is your blood pressure? When mine drops (like when I move to a standing position quickly) I feel shaky, grey and light headed. Could that be it?

 

Hypogylcemia can give me the shakes and make me weak too; that has improved with cutting carbs and gluten.

 

What is your tTG reference range? I would guess 29 is still high. If so then your recovery is very slow, or you are being glutened... somewhere.

 

Best wishes. I hope you find an answer.

Nicole, I asked to see the endocrine doc,  I was worried that my blood sugar seemed a bit low, my PCP wasnt concerned, but she did give me the referal.  The ED was not thrilled to see me and wanted to know why I was even there.  Again, everyone tells me that my high ANA means nothing.   He did check a few thyroid labs, and my cortisol.  He called and said everything was pristine.  

But I did find myself drinking more coffee esp in the afternoon, just to get by and that would be on a good day.  My weight has stableized and has stopped dropping. Before I got sick I was wearing a size 16 pants and now I'm in a 4 or a small and they fall off me.  Not that I'm complaining about that......all those years in Weight Watchers....LOL...but it's not normal.

I do try to eat when I get like dizzy, b/c I feel like that will make a difference, but it doesn't.  My blood pressure is all over the place.  Lately its been more normal, but it has been low.  And I did have a tilt table test, and it did drop on the table, but it stablized quickly.  But I will be dizzy driving in the car.....or just sitting.  It does get worse when I stand quickly, but it definately happens when sitting too.

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The "Fasano diet"  as I understand it is prescribed when people are not responding to a "typical"

G F diet (for a variety of reasons)

and it means whole foods, no packaged gluten-free items and eating out is a no-no because there is no way to control CC.

 

However, you report "3 accidental exposures". IMHO, those are the likely culprits, hon.

 

You live in a 100% G F house, so where is the exposure coming from?

 

That is probably causing these symptoms, because I had the same ones before I was G F.

 

It's not psychosomatic. No one makes up this sensation.

 

I always go with the obvious culprit before trying to sort out the other potential causes.

 

P S Are you the same Joy I "met" on GD's site? just curious.

irish,

i'm back b/c I miss you.  yes it's me. 

The exposures...one last November...I used the wrong seasoning packet in my crockpot...I bought it w/o double checking the ingredients b/c I thought I used it before and it was fine.   WRONG....within 45 minutes I started to get sick.  The stomach issues subsided within the first few days and I was left a waste case with severe neuro issues and bone pain for 5 weeks.  Doc tried me on budesonide to help shorten the time I was sick.   

Next exposure... Dec 26 at a popular boston restaurant, well known for gluten-free menu....again within 45 mins....another 5 weeks.  Doc had me change way I took budesonide to make it more responsive and get into system quicker...I was a bit better, but still another 5 weeks...he then at the end changed me to prednisone.   

Though even after weening off the steroids, a few days later I was still feeling these weird neuro things...It's like a disconect.  My face is like a blank stare, and I just don't seem present at all.  They checked me for seizures.  there was something abnormal in my first eeg, but it was more consistant with migraines, and I don't have those.. I did the ambulatory, but I didn't have an episode then.  They don't happen every day or every week.  Maybe once a week, or at least 3x a month.  

Now back 1.5 yr ago, when I was first diagnosed, I was so sick I couldn't walk.  those symptoms were more severe then.  They calmed down a bit, but I noticed them getting worse this summer.

Third exposure...April...went to Sandals...where they promissed my husband that they welcome severely sensitive celiacs all the time....ya....I was contaminated 2x!  Same restaurant.  I knew that something was off...my stomach was off and  I was dizzy again.  chalked it up to too much rum punch...still feeling my way around this whole celiac thing....then I find out the corn chips they told me, of course they are gluten-free...were fried with the chicken patties....about 15 minutes before they promissed they would fry the french fries in their own oil and get me a gluten-free bun.....which the minute i bit into it....it tasted too good.  the second bite I woke up and about spit across the table. long story...we got the money back for the trip.  

I went home and took the prednisone right away, and I was able to function much better.   Where the other times I couldnt function for 5 weeks.  ARGH

I guess there was a fourth time....though that was my reaction to gluten-free oats....really bad.  Totally changed my personality too....

Next time I saw Dr. Leffler, he suggested trying the Fasano diet.  He thought I would freak over it , but it wasnt too different from the way i was already eating..yet it wasn't as easy as I thought.  12 weeks....first 4..only fish, chicken and turkey, fresh fruits, veggies, fruit juice, veggie juice, fresh herbs, salt, pepper, honey.   After week four, added beef, pork , lamb, lemon and nuts (only bought from nuts.com...no risk of contamination).  Nothing processed nothing touched by humans at all...

Now I bake a lot, esp for my kids.  I would rather give them something I can control, and something that I have perfected and tastes great, than something in a box...I don't generally eat that stuff,  but I would occasionaly have a bite.  My biggest fear was losing all the other gluten-free grains.  Now I really don't care much at all about that.  I felt much better on the Fasano.   So I guess I'm trying to stick to it not that it's done.  Last night I had Rudy's gluten-free stuffing (i usually make my own from baked breads..but i'm trying to simplify things)....I was up all night.

Since the Fasano, I sleep through the night.  I used to be up 5 times a night to go to the bathroom and then couldn't fall back to sleep without swigging the gaviscon.  (i also take 80 mgs pantroprazole and 150 zantac  and my bed is on huge blocks...I just started to cut the zantac).  Those things getting better, the dizziness and wierd episodes remain.  I felt that they were getting worse, but it may be that they are just more pronounced now?  The drs stopped my driving in August.  They thought it might be seizures, but they couldn't prove or disprove.  They started Keppra (it was gluten-free)to see if it made a difference.  It kickstarted my symptoms into high gear.  The episodes were one after another...they usually happen when I'm walking, and it is like walking through mud...this time they came when I was sitting....and they were almost everyday.  I was a mess.....I got off of that drug......I was still having the brain sensations on it....thus not seizures...which Im not surprised....but what the heck?  I can have the episodes without the brain fluttering....I actually hadn't felt the brain thing for months and it came back this summer.  The other thing that is coming back is the joint stiffness...So my fear really after some things got better on the fasano...some things got worse or came  back.....and I am scared as heck to go back to where I was in the beginning.  

But in my gut ( no pun intended) I know I'm not nuts, but I think my file in the hospital (which is huge) says that. 

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I told you before and I'll tell you again...you're not nuts. :) Don't let any doc tell you that, Joy. None of us think you are making things up.

 

If I were you, I'd go back to Dr. Leffler. Ask him what he thinks about the high ANA and the sensations. Unless a doctor (with a specialty like neurology or rheumatology) has knowledge of celiac and its myriad symptoms, they are just going to symptom-treat and send you packing IMHO

 

So, who gave you the steroids? In my opinion (for all that's worth, because I am not a doctor) those things totally screw with a celiac's guts

and adrenal glands and my celiac friend who has taken steroids to control her microscopic colitis becomes a raging ultra- panicky jazzy ball

of energy whenever she takes them. Totally not herself at all. She says they make her feel as if she has had 18 cups of caffeine.  She gets paranoid and she cannot rest or sit still. My short exposure to them (to try and stop intense spinal/bone/neuro pain a couple years ago) convinced me they are not worth ever, ever trying them again. I was so hyped up on them I was trembling and jittery and thought I would burst out of my own damn skin. I felt like I was on speed and my brain was buzzing like mad..

I do not know how anyone takes steroids even though I know they help control serious AI issues, asthma, etc.. 

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I told you before and I'll tell you again...you're not nuts. :) Don't let any doc tell you that, Joy. None of us think you are making things up.

 

If I were you, I'd go back to Dr. Leffler. Ask him what he thinks about the high ANA and the sensations. Unless a doctor (with a specialty like neurology or rheumatology) has knowledge of celiac and its myriad symptoms, they are just going to symptom-treat and send you packing IMHO

 

So, who gave you the steroids? In my opinion (for all that's worth, because I am not a doctor) those things totally screw with a celiac's guts

and adrenal glands and my celiac friend who has taken steroids to control her microscopic colitis becomes a raging ultra- panicky jazzy ball

of energy whenever she takes them. Totally not herself at all. She says they make her feel as if she has had 18 cups of caffeine.  She gets paranoid and she cannot rest or sit still. My short exposure to them (to try and stop intense spinal/bone/neuro pain a couple years ago) convinced me they are not worth ever, ever trying them again. I was so hyped up on them I was trembling and jittery and thought I would burst out of my own damn skin. I felt like I was on speed and my brain was buzzing like mad..

I do not know how anyone takes steroids even though I know they help control serious AI issues, asthma, etc.. 

yes, I don't love the steroids.  Dr. Leffler prescribed to help with the severity of my gluten exposures...I saw him friday, and asked him about a lot of this stuff.  He did say that he has patients with the brain fluttering sensation.  Not a lot, but some.  Which thank god...b/c they neuro guy kept saying, what is that? I have never heard of that.  Maybe its a conversion disorder....argh.

at this point leffler said if I keep having the episodes and severe dizziness, try taking a low dose of the prednisone for 3 days, to see if it calms everything down and it goes away.

primary talked about getting someone to start me on a rheum drug like plavenquil?  I had one doc say she did think it was an autoimmune responce to the MRSA infection I had 2 yrs ago.  I kept telling everyone that was the start of my downfall.  I really havent been the same since then.  And my primary wants to dismiss it...says it has nothing to do with the mrsa....But that kick started everything. The fatigue, the multiple food allergies...the celiacs that has apparently been there all along....who know what else.  I just don't understand why they refuse to look at that

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Me neither, since all the medical lit says an infection can trigger celiac. I think it's entirely possible it's related. (again, this is IMHO)

 

Sorry, Joy. :(  It baffles me why you have symptoms that keep recurring but it sounds as if Dr. Leffler is doing his best to help you.

 

do you mean plaquenil perhaps? If so, you will not be able to take antacids with it. They interact.

 

http://arthritis.about.com/od/plaquenil/a/plaquenil.htm

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He is.. I have a repeat endoscopy scheduled in jan. An yes that was the drug.. I did read that about the antacids so i dont think it would be good.

So frustrating.. Of course, i know the mrsa was the infection that threw everything into play.. Dont know why they dont want to discuss that. I think it makes them nervous...pcp told me to stop throwing that word around

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yeah, because that will "make it go away"? so, why can't you say it? I do not get that at all.

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I definitely agree about continuing to see your doctors for help.  They may find something else that is treatable.  

 

The fact that the Fasano diet seemed to help is an indication to me that you are sensitive to very low levels of gluten and that could be the problem.  I am sensitive to very low levels myself.  I have spent 6 years working on figuring out what to eat with careful elimination/challenge dieting and other methods.  My son is as sensitive as I am which helps a lot.  I also know other sensitives who share what they can eat with me and that helps me find things that are safe.  I read that Hollon Fasano  study and there are foods in their diet which make me sick.  It may be that you need an even more stringent diet.  If you are interested in that, we could talk details.  I believe that I get different levels of glutening from different levels of gluten exposure.  A glutening from a restaurant feels very different to me than an ongoing glutening from low level contamination in my daily diet.

 

As sensitive as I am, and as careful as I have to be, I am currently symptom free.  It is worth every bit of effort.

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Irish.. I'm not sure... I feel like most drs try to downplay the seriousness of the infection.. But peoe die from it all the time.. And my friend had two daughters who developed autoimmune diseases after the infection. Maybe they are afraid of law suits maybe they are told to downplay.. Who knows. Its too logical to me.

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Yes, i would be interested to hear what you have found with other sensitivities and low level exposures...

I think that there is no way there could be contamination in the products that i use daily.. But how do i know that for sure? Because a list or a company said so? A list once said i could drink omission...lol.. Not so much.

I need to look at this from all angles

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. Maybe they are afraid of law suits maybe they are told to downplay.. 

 No doubt!

 

One more thought...how often are you eating out, Joy?

I am thinking that's the most likely culprit---even if you confine yourself to the foods on the Fasano diet.

CC is the bane of our existence. I do eat out successfully, but I am very, very careful about the places I choose.

Just a thought.

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If your Doctor is suggesting Plaquenil then he must suspect an additional Autoimmune Disease which would go with your positive ANA. Of course if your getting cc'd then that would explain the continued AI response.

 

Plaquenil is an immune suppressant and it tough to tolerate.  I would push for an additional diagnosis.  AI Diseases like to have friends :)

 

Colleen

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I dont eat out very much anymore.. The restaurants that I tend to trust are far away. There is a burger place near us that has a dedicated fryer but im

Very careful there. I wont even get the gluten-free bread... Its not worth it. The least amount of movement from grill to plate the better.

I want to say maybe 2/3 x a month. Thats between maybe a lunch or dinner. I sued to eat out constantly. Now its not worth the risk for subpar food

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I eat out about once every two months.  That's just me.  I have horrible reactions so I just don't chance it anymore.

 

Colleen

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I dont eat out very much anymore.. The restaurants that I tend to trust are far away. There is a burger place near us that has a dedicated fryer but im

Very careful there. I wont even get the gluten-free bread... Its not worth it. The least amount of movement from grill to plate the better.

I want to say maybe 2/3 x a month. Thats between maybe a lunch or dinner. I sued to eat out constantly. Now its not worth the risk for subpar food

I know you will not like my answer, but here goes:

 

Stop eating out. Period. I think this is your problem. IMHO and feel free to ignore. 

But it is the only way to stop the constant inflammation and symptoms.

 

Take care!

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I know.. I think you may be right...

Please, though...still see someone about the high ANA.. It's not always about the gluten. We all seem to have something else AI

that has come along for the ride. 

But if you stop the gluten exposure, all of that may resolve. :)

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Hi Arlene,

These things definately were present and worse at the time of a gluten reaction.  But they continue when there is no gluten reaction.  My gluten reactions are pretty severe and last approx 5 weeks.  I haven't had one for a while.  That's not to say that there couldn't be traces that get through in a restaurant here and there, but I don't really go to them as much anymore at all.  

Since the super restrictive diet, lots of things have calmed, some things seem to be getting worse or standing out....These are the things.  So I wonder, could it be ongoing damage that hasnt healed yet? Or is it something else.  If it's something else.  I have exhausted the drs. in this city.

It is nice to hear that you feel these things too.  Do you feel the vibrating/ fluttering sensation in your brain?

yep - the only thing i can compare it to is when i was a "weekend warrior" in my young and bulletproof days when we would spend two days drinking any and all alcohol we could get our hands on then had a wicked hangover.   maybe it's dehydration related?  <the brain thing)  now, when i get glutened it feels like that (i hardly drink anymore oy vey and certainly not almost to death!)  i always drink a ton of water when i'm wading thru the gluten blues - seems to help.

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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