Could This Be Celiac?

[kellenor]

My name is Kelly, and I am a 28 year old female living in Ontario. I work full time in administration.

For 2.5 years now I have been feeling "spacey" -it's a rather subjective thing to try to define or explain to a doctor, but the best descriptions I've been able to come up with so far are that I feel like I am always stoned on cold medicine, or like I have the feeling you get when you're sick with a bad cold and say you feel like you're walking around in a dream. I am always tired, would love to just sleep all day, and am suffering from depression (not sure if it's because of the spaciness, or the other way around.) I have also gained a significant amount of weight (partially, I realize, due to poor diet and lack of exercise, but it still seems excessive to me.) To date I have had many appointments with my family doctor, and have also seen an ear/nose/throat specialist, a hematologist, a rheumatologist, a neurologist, had a colonoscopy because of my constant loose stool/diahrrea (and have been diagnosed with IBS), had an upper g-i series, had my vision checked, had umpteen blood tests performed, had a head scan, an EEG, EKG, ECG, have seen a counsellor on several occasions, have ceased taking birth control pills - in case they might be the culprit - and am currently taking Zoloft (tried Celexa before) for depression, as well as Lorazepam occasionally as needed. I just saw an endochrinologist, who said I am borderline hypothyroid, and started me on synthroid. I've just stopped taking them because they were giving me some really strange side-effects. I'll have to go back to the dr. to talk about this. I am also scheduled to have an x-ray of my lower spine and to have my nervous system examined.

My question to you is, do any of you suffer from this "spaciness"? Is there hope that I could overcome this (I am beginning to lose hope myself)?

I really look forward to hearing from you.

Thanks for your time,

Kelly

[gf4life]

Kelly, YES! Many of us Celiacs suffer from this before going gluten free, and also during gluten contamination episodes. Some people call it different names like fuzzy mindedness, or brain fog, or spacey, but it is all pretty much the same feeling. During all the testing did they ever test you for celiac disease? Celiac Disease can often mask itself and the tests the conventional doctors use can fail for a variety of reasons. You should be checked for it, and if the conventional tests come back negative (as all mine did) yet you still have symptoms, them I would conscider checking into Enterolab's tests for gluten sensitivity. You can find info on these tests at Open Original Shared Link Many of us have had to get our diagnosis from them, since they offer the top of the line most accurate test available, yet these same tests are not accepted by most doctors since they are fairly new. It takes like 10-20 years to get them into the mainstream medical field and they have not been around that long. I do hope you can figure out what is wrong with you , but it does sound like it could be celiac disease.

God bless.

Mariann

[Lily]

Hi Kelly,

Yes, my bio could be a carbon copy of yours. I could never explain my spaciness and lack of memory for certain things. My weight gain didn't make sense either. I was on zoloft for 3 years and they had to give me a booster for it, which in the end none of it really worked that well anyway. My thyroid has just started acting up, but if you do your research, you'll find all of these are symptoms of Celiac. You could very well be allergic to gluten. If you have an idea of what is wrong with you, push the dr. or find one who is knowledgable about the disease. My diagnosis ended up being a simple blood test and a biopsy which was painless for me. I wish you luck and I think you're headed in the right direction!

Lily

[midnightjewel40]

YES

i had the same things you need to get your doctor to do a blood test first for celiac disease

and then if you want to you can have the endo scope to make sure if that comes back nothing then try gluten free for a couple of months and monitor yourself but tell your doctor what you are doing you just might find that you have this as celiacs is a mimicking disease everything else covers it up hope this helps and get so help soon ok let me know how you went as we all want to know

take care jacque

[wclemens]

Kelly, I feel for you. So many of us have experienced the same route of going doctor to doctor to try to find out what is wrong, with a definitive answer being elusive and seemingly out of reach. I want to assure you that you are not alone in feeling the way you do. Having read so many posts on this site during the past two years that sounded similar to yours, I would say that it sounds as though you could be a good candidate for a celiac diagnosis.

I recently sent away for the full spectrum of Enterolab tests for my infant grandson, and was able to learn within a month that he is gluten sensitive and allergic to milk and dairy, all through a stool sample and a swab from the inside of his cheek. He has been thriving ever since we took him off the milk formula, and he only has distress when he encounters forbidden foods accidentally. He will never have to eat gluten and suffer, as we have.

I wish you well in your search for good health, and please know that others of us have had similar depression and feelings of ill-health while ingesting gluten (in my case I have to stay away from all milk, dairy, egg whites and yeast in addition to gluten). After many hospital stays and spending a good deal of money on doctors, I tried an elimination diet, learning over time what I could tolerate. Your body will be faithful to help you learn what will make you feel well. Best of luck to you. Welda

[midnightjewel40]

oh your poor little bubby so glad it was picked up so soon your right he wont have to encounter the pain of not knowing what wrong you should be proud of yourself you have given you baby the best start in life anyone could

jacque

[natalieb]

Somethimes I have found myself unloading the dishwasher and putting the dishes into the fridge...does that answer your question about spaciness? You are not alone; however, your thyroid can really mess you up if not properly controlled. I know, I am 39 and had graves disease. This diagnosis was made when I was about 28. At 38, I was diagnosed with celiac. I am a college degreed career woman who was misdiagnosed by my old doctor for 6 years. Do not make the same mistake as me and let them tell you that it is irritable bowel syndrome or colitis. Get second even third opinions. The doctor that I had here in Pgh was extremely incompetant even though some people here thought the world of him. I got a progressive doc at presby hosp here and he saved my life. At last all these weird symptoms could be explained. Thyroid and celiac go hand in hand as they are both autoimmune disorders. If you have a doctor who isn't listening, get rid of him and demand the test for celiac. At least you know. You are on the right track. I wish you luck. Natalie

[ROYAL BLUE]

This Entrolab everyone talks about, it is in the US correct? Do they do testing from Canada, and do you know what they charge? Thanx

[Guest jhmom]

Yes, I believe Enterolab is located in Texas. I am sure they ship to Canada, you can check out their website and e-mail if need be. www.enterolab.com

Hope this helps

[DLayman]

Heheh I am so spacey sometimes I leave the I out of my name...

Denise

[midnightjewel40]

The more i come into this group the more i find out things about myself i thought noone else experienced i am normal and i am me hehehehehehe

i have been 14 months now and still i find thigs out

i do get spaced out and put the sugar in hte freezer then rant and rave about who put the sugar away and why can i find it

there is hope

jacque

[faithladene]

Dear Kelley,

The love of my love was diagnosed with Celiac disease 6 months, ago. He, evidently, had this disease for, at least, the last 12 years, and, perhaps, for 20 years.

After, researching, a tremendous amount, on the internet, I have discovered, the U.S. is the worst country to have Celiac Disease diagnosed. In, Italy, I have learned, all children are tested by the age of 6, because, of their realization of how prevalent it is. In the U.S. it takes, on the average, 12 years, to eliminate iritible bowel syndrome, acid reflux disease, etc. to, finally, consider, Celiac.

Without getting the biopsy, I would suggest, eliminating all gluten products from your diet for 2 weeks, and, see how you feel. If, you feel better, ask your doctor for the biopsy.

My love's villi in his colon is petrified, please, consider, a biopsy, or complete diet change, before, it is, too, late.

Sincerely,

Faith

[jknnej]

This is weird but can you explain why I now have this "fogginess" AFTER changing my diet to gluten free? I never had it before when I was eating wheat and getting tummy aches. I am afraid-why would I have it now that I've gone gluten-free?

any ideas?

[judy05]

Hi Kelly,

You sound like me. I had what I called "brain fog" before and

after going gluten-free. My GI Doc glossed over it. He is only

concerned "bowel" problems. He just said some people complain

about it. They don't seem to "get it" about how debilitating

it can be. It ruins your concentration, socialization, and is

just plain scary. I read a lot about it and I came to the conclusion

that it was dairy that was causing me to feel this way. I

happy to say that after a few months of going dairy and CASEIN

free this went away.

Gluten free, dairy/casein free really work for me!

I am able to tolerate Extra sharp cheese and provolone. I've tried

every type of milk but after one year on this diet I can't yet do milk.

Hope this helps, I totally know how you feel.

[Sycamore]

Hi, I know this is an old thread but I'm new. I'm not sure whether I'm coeliac or not but I too get the "foggy" feeling quite often, along with the tiredness and lethargy. When I was little I suffered from severe malnutrition and grew very little, I couldn't eat much before I felt uncomfortable and ill. I was in and out of hospital, having tests for seemingly anything and everything but the doctors never found an answer, one even attempted to blame my parents for underfeeding me.

I had a biopsy for coeliac disease which was declared "inconclusive" but they put me on a gluten free diet for 2 years. In that time I gained weight, and now as an adult I am thin but not a stick, and only on the small side of average. Although I am not losing weight I can't seem to gain any either, and cannot eat much before feeling uncomfortable. Bread and pasta especially make me feel heavy and bloated. I'm not sure what to think, can anybody give me any advice?

[Diosa]

Hi Kelly! I'm new here too, and know just what you mean about the brain fog/spaciness. I was having that too for a ong time. I tried cutting out sugar and refined flour, as that was what seemed to be the culprit (I would actually get close to fainting eating some of that stuff) but it only did part of the job. Cutting out wheat/gluten has helped quite a bit for me, and I'm considering trying dairy and eggs just to see f that doesn't take it the rest of the way. This place has really been a major helpfor me and I hope it will be for you too.