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I posted in another topic that my doctor only tested for two of the five test that make up the celiac panel. After I took the blood test (first week in Feb.) I stopped eating oatmeal immediately, thinking maybe I was really just slowly poisoning myself with my daily bowl. Immediately I could get up in the morning, the brain fog and the pressure in my head were gone. As I waited for my two test to come back I slowly gave up gluten, convinced that they were coming back positive. I've had no oatmeal for three weeks an no gluten for one. I felt good. Only one morning of feeling nausea, but that I think was the coffee, an new kind with cinnamon. Ive had none of the symptoms in three weeks.

I am obsessed with celiac news and lifestyle, because I see alot of the symptoms in restrospect. Also, at 8 months my son had a surgery for a fistula, his pedi said that we should consider celiac testing when he is older as that is common in the disease. The surgeon said no! Some babies just get them. He is four now and sometimes will cry out that his stomach hurts. Real pain. In the mean time we have switched pedi's and the new one doensnt think the stomach hurtings are anything. Because it goes away and he is not sidelined because of it. My brother was also diagnosed with Celiac Sprue a few years ago.

I bring that up because last night I was cooking dinner and in frustration made a dish with cream of mushroom/cream of celery soups. I was in tears because I was torn (since I dont have a diagnosis and I need to be on gluten to be tested versus, I've felt good for weeks and really dont want to feel bad anymore. My appointment with the gastro is March 8) I was torn between making it or not. But I know in my heart that I will need a diagnosis in the future. For Me. and for my family. They have convinced me that all my symptoms are brought on by my thinking. (If only I had that much mental power !) So I made the dish and left a portion of it sauce free, then I ate (about a cup) a portion with and a portion without the soup.

A few hours later my stomach hurt soooo bad. puffy and tender. I convinced myself that it was either the addition of pysillum fiber (without relief) or the glass of wine I had with it and let it go. I took a stool softener before bed to help the fiber.

This morning I woke up and the groggy feeling was back. My back hurt tremendously. Little brain zaps again. I have felt like crap all morning. I did end up getting relief with the stool softener, but my stomach still hurts and I am cloudy and icky. (I am use to feeling this way after BM's so it would be easy to contribute it to that.)

I am so unsure of myself and the conditioning that this is all in my head that I cannot just say, it was the little bit of gluten I had last night. Could it take that little bit after only being gluten free for only one week? Or, am I just wishing it were, so that I could have an answer for the way I feel? Did anyone else make up excuses or justification why it wasn't gluten? I think well maybe it was just a good few weeks and the feeling is back. I've had good weeks before. Maybe it is hormones? Maybe it is stress? Maybe it is anger?

Could someone relate to me and help me not think I am crazy?

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I posted in another topic that my doctor only tested for two of the five test that make up the celiac panel. After I took the blood test (first week in Feb.) I stopped eating oatmeal immediately, thinking maybe I was really just slowly poisoning myself with my daily bowl. Immediately I could get up in the morning, the brain fog and the pressure in my head were gone. As I waited for my two test to come back I slowly gave up gluten, convinced that they were coming back positive. I've had no oatmeal for three weeks an no gluten for one. I felt good. Only one morning of feeling nausea, but that I think was the coffee, an new kind with cinnamon. Ive had none of the symptoms in three weeks.

I am obsessed with celiac news and lifestyle, because I see alot of the symptoms in restrospect. Also, at 8 months my son had a surgery for a fistula, his pedi said that we should consider celiac testing when he is older as that is common in the disease. The surgeon said no! Some babies just get them. He is four now and sometimes will cry out that his stomach hurts. Real pain. In the mean time we have switched pedi's and the new one doensnt think the stomach hurtings are anything. Because it goes away and he is not sidelined because of it. My brother was also diagnosed with Celiac Sprue a few years ago.

I bring that up because last night I was cooking dinner and in frustration made a dish with cream of mushroom/cream of celery soups. I was in tears because I was torn (since I dont have a diagnosis and I need to be on gluten to be tested versus, I've felt good for weeks and really dont want to feel bad anymore. My appointment with the gastro is March 8) I was torn between making it or not. But I know in my heart that I will need a diagnosis in the future. For Me. and for my family. They have convinced me that all my symptoms are brought on by my thinking. (If only I had that much mental power !) So I made the dish and left a portion of it sauce free, then I ate (about a cup) a portion with and a portion without the soup.

A few hours later my stomach hurt soooo bad. puffy and tender. I convinced myself that it was either the addition of pysillum fiber (without relief) or the glass of wine I had with it and let it go. I took a stool softener before bed to help the fiber.

This morning I woke up and the groggy feeling was back. My back hurt tremendously. Little brain zaps again. I have felt like crap all morning. I did end up getting relief with the stool softener, but my stomach still hurts and I am cloudy and icky. (I am use to feeling this way after BM's so it would be easy to contribute it to that.)

I am so unsure of myself and the conditioning that this is all in my head that I cannot just say, it was the little bit of gluten I had last night. Could it take that little bit after only being gluten free for only one week? Or, am I just wishing it were, so that I could have an answer for the way I feel? Did anyone else make up excuses or justification why it wasn't gluten? I think well maybe it was just a good few weeks and the feeling is back. I've had good weeks before. Maybe it is hormones? Maybe it is stress? Maybe it is anger?

Could someone relate to me and help me not think I am crazy?

No your not crazy but you are most likely gluten intolerant or celiac, IMHO. It's not all in your head. Hope you feel better soon.

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The doctors at Hopkins and Mayo told me it was in my head, too. Unfortunately, it was, and because I wasn't gluten-free because of them, a chunk of my cerebellum was destroyed. Listen to your body, not some callous, ego-driven idiots!

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You're not crazy. Even if tests don't come back positive, you know your body. Listen to it!

I have to agree. My (blood) tests (at my primary docs office) came back negative after only 3 weeks of firm gluten free living, and he said that the levels wouldn't have dropped that fast, so he wouldn't "diagnose" me, but I knew how I felt. No more acid reflux, BM problems, migrains, muscle aches and pains, sleeping problems....I didn't need him to say it to me, I knew for myself. ALSO, you said that your brother was diagnosed with celiac. My paternal grandmother had it. That is one HUGE red flag for me. I KNOW that I have celiac disease, and I think that three weeks off of gluten brought my levels into a "normal" range. BUT I am NOT willing to do a "gluten challenge" to see if they go back up. I feel too sick when I eat it to do so for a couple of weeks for a blood test that won't tell me anything more than I already know, that I will have to live gluten free.

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Guest Robbin

I have had the same self-doubts, so when my dr told me the test (another long story) was negative, I went home and had a piece of pie that night. I got so sick (by this time I was gluten-free for about 2 1/2 wks). Even then, I doubted myself--thought I was losing it--started to believe my son who said I was a hypochondriac--until I accidently got glutened by some cookies I thought were gluten-free. I was experiencing some chest tightness, burning/lump in throat that was REAL so I checked the label. Sure enough, barley! I am getting really sensitive and learning to identify the "cues" my body is sending. I was so sick and brain-fogged out before that I just hurt all over and couldn't differentiate. YOU are not crazy, you are ill. You will get better! Check out the DOCTORS posts--the 'Angry with Drs.' section--Your son's surgeon seems to be in the "reluctance to dx celiac" medical club. Take care of yourself. Yes, this is real and you will be so much better gluten-free.

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I thank ya'll so much for taking the time to listen to my vent. I am just so weary from all of this. My husband is mad at me because I made the decision to continue eating gluten until after I see the GI. ( He noticed a big difference these past three weekss.)

I told him that no matter what the outcome of this visit was, we would go gluten free. I just would like a definitive answer if possible.

To that end I made my favorite Carrot Cake Muffins with whole wheat flour instead of the gluten-free mix I bought and have been irritable, tired and had head pressure all day. (I know I have my answer, but just want to wait until the GI, if possible)

Tiredofdoctors? What did you mean The doctors at Hopkins and Mayo told me it was in my head, too. Unfortunately, it was, and because I wasn't gluten-free because of them, a chunk of my cerebellum was destroyed. Listen to your body, not some callous, ego-driven idiots! If you don't mind me asking?

I've been to a neurologist and had an MRI (the left side of my face kept going numb) All blood tests that he ran came back normal, but they found several "white spots" on my brain? I still have to follow up with a test for MS and a test that determines something to do with motion sickness? I thought I read that celiac disease could cause "calcification" on the brain? Which is one of the things he said the white spots could be, but he was thinking from high colesterol?

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No problem. Don't know about the calcification, but the white spots are indicative of MS -- which, evidently, often coincides with Celiac, from what I've read. (Don't want to scare you though -- I DON'T know about the calcification). I don't have celiac. I have Gluten Ataxia. I have anti-perkinje antibodies, as well, and when they cross-react with the anti-gliadin antibodies, they destroy perkinje cells. They're primarily located in the cerebellum of your brain, a significant part of your retinas, and some portion of your peripheral nerves. It's the pitts, sometimes, when I think about it . . . I'm in a wheelchair because I walk worse than a street drunk on a 7-day bender. I fall a LOT, even with the walker, so . . . .wheelchair it is. What is ironic, though, is that prior to this, I had my own physical therapy practice! I went from practitioner to patient. Feels kind of strange, but I'm getting used to it, I guess. My advice: You know your body better than ANYONE. The funny thing is, I used to tell my patients that. I think that's the one thing that has given me a sense of peace with this . . . I really listened to my patients, took their concerns seriously -- even when the doctor had blown them off, and respected that no one knew their bodies better than them. I believe that now, more than ever. Take care of yourself, and don't settle . . . . you deserve much more than mediocrity. ((Hugs)), Lynne

P.S. Weary is the word I used to describe when I was in the diagnosing phase of this, as well. Still in some of the diagnosing part -- just got a few new "autoimmune diseases" to add to my list, but, I've gotten "immune" :lol: to hearing it, and now just say "oh, well."

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(((HUGS))) to you TiredofDoctors!!

Also, Thank you for your words of encouragement.

My brother was also diagnosed with a different auto-immune disease. Actually one that his doctor said that "the family" should be tested to see if they have the gene for? I don't know what it is, guess I should follow up with that.

I've mentioned to all the doctor's I've been to that sometimes, (usually in the early morning between wake and sleep) that I get little brain zaps. (Like the sound you would get putting two wires together?) if that makes sense. I even mentioned it to the neurologist. None have commented it on it? I even have a friend at church who was a neurosurgeon and he didn't say anything about it except that when the body is tired (stressed) it could do that, but that if it continued I should see a doctor?

The whole thing is just so frustrating isn't it. They go to school all those years to help people, then when people need help they rely on the standard, and if you don't meet the standard then "it's nothing." Last year I went to (the same) doctor because I was beyond tired. He said it was because I was a mom and did the basic blood work. It (of course) came back within range so I was fine. He started to leave. I went off on him and said, well since the blood work says Im fine, that's it then. This tiredness is just in my head. I DONT THINK SO!! I am not tired because I am a mom. I am beyond tired and it is affecting my ability to be a mom. He was so angry, his whole face was red. He scratched down some additional blood tests and walked out. That is when I found out that I had Epstein Barr (mono). He was singing a different tune when I went back in. "Well, we knew it was something didn't we, it was just a matter of finding it...what the....? He basically had the same demeanor about the celiac. It really wouldnt matter if you had it because it would be impossible to control it because the diet is impossible. Here let me give you two test (the wrong two) to pacify you then be justified that I was right.

Anyway. I am just rambling. It is awesome to have a place to discuss things that no one in my circle cares to hear about. (the are all so over me not feeling good.....)

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Guest Robbin
(((HUGS))) to you TiredofDoctors!!

Also, Thank you for your words of encouragement.

My brother was also diagnosed with a different auto-immune disease. Actually one that his doctor said that "the family" should be tested to see if they have the gene for? I don't know what it is, guess I should follow up with that.

I've mentioned to all the doctor's I've been to that sometimes, (usually in the early morning between wake and sleep) that I get little brain zaps. (Like the sound you would get putting two wires together?) if that makes sense. I even mentioned it to the neurologist. None have commented it on it? I even have a friend at church who was a neurosurgeon and he didn't say anything about it except that when the body is tired (stressed) it could do that, but that if it continued I should see a doctor?

The whole thing is just so frustrating isn't it. They go to school all those years to help people, then when people need help they rely on the standard, and if you don't meet the standard then "it's nothing." Last year I went to (the same) doctor because I was beyond tired. He said it was because I was a mom and did the basic blood work. It (of course) came back within range so I was fine. He started to leave. I went off on him and said, well since the blood work says Im fine, that's it then. This tiredness is just in my head. I DONT THINK SO!! I am not tired because I am a mom. I am beyond tired and it is affecting my ability to be a mom. He was so angry, his whole face was red. He scratched down some additional blood tests and walked out. That is when I found out that I had Epstein Barr (mono). He was singing a different tune when I went back in. "Well, we knew it was something didn't we, it was just a matter of finding it...what the....? He basically had the same demeanor about the celiac. It really wouldnt matter if you had it because it would be impossible to control it because the diet is impossible. Here let me give you two test (the wrong two) to pacify you then be justified that I was right.

Anyway. I am just rambling. It is awesome to have a place to discuss things that no one in my circle cares to hear about. (the are all so over me not feeling good.....)

I have had the symptoms of extreme fatigue, numbness in my face, tingling in my feet, and numb toes for years. Dizziness, "motion sick, etc. The doctors have all chalked it up to fibromyalgia and depression, so I thought, ok, I have to live with it--then the D kept getting worse and I am losing my eyesight. Been on the dr. merry-go-round so much, but now--finally am getting results. I am scared, too and am so thankful for this forum-people who are sick and boom get a dx and get on with it-they don't understand the insidious nature of this and just how serious it can be. Thank God we have each other on this forum-because I don't know what I would do without it. Thank you, Lynne and "hungryforlife" for sharing and I hope we can comfort each other in this. I think I have a long road to recovery, as many of us do who have gone so many years undiagnosed I'm 45 years old and have been sick for most of those years and am SO ready to get as well as possible. Strength, courage, and peace to you.

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Guest nini

hello "Hungry" nope you are not crazy and it is not all in your head... I know you feel like you need a definitive dx, I do understand this (I tried going gluten-free after 2 miscarriages and ended up with my daughter) but my ob/gyn talked me out of it saying "it was all in my head" Uh huh... where have I heard that before? Anyway, after complicated pregnancy, nearly dying and then 3 more years of being sick, I was finally correctly dx'ed. Now, what would have happened if I had just trusted myself and listened to my body sooner? Dunno... can't live with regrets, but I can tell others about my experience and say IF YOU DON'T GO GLUTEN FREE NOW IT WILL JUST GET WORSE.

You've said even if the test results are inconclusive you will go gluten free, but you feel better gluten free? Honey... GO GLUTEN FREE NOW. Your body is trying to tell you something. I've spoken about this very vehemently on this board that Dr.s are extremely reluctant to even try to dx Celiac. They are under the mistaken assumption that it is rare. It is NOT rare. They are under the mistaken assumption that only the classic presentation of the wasting away malnourished patient with severe diarrhea is the ONLY true case of Celiac... Do you want to wait until you get much sicker? No, Find a Dr. that will support you in your "positive dietary response" dx, and you and your family just stick with it.

With your brother having it, YES, every first degree relative of a dx'ed Celiac has to be tested and if you told any Dr. that your brother had this and they STILL refused to test you "because the diet is impossible" then you need a different Dr.

My advice is LISTEN to your body and go completely gluten free NOW and seriously consider trying your kids on the diet too...

yes, currently the OLD medical standard is that they have to have a positive biopsy for a dx, but I'm here to tell ya, this mentality is soon to be going out the window. It is outdated and misinformed. Positive biopsy is indicitive of SEVERE Celiac... not the beginning stages, not where you can PREVENT some of the damage that some of us have to live with because we went undiagnosed for so freakin long.

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I get those little zaps in my brain too. Although, I have never told anyone. People already think I am crazy enough, without adding that to the list. I'm just razzing you !!! Seriously though, I do get them and I get zaps in other places like my abdomen, fingers and toes from time to time.

I know what you mean about being treated like you are crazy. I had all kinds of weird nuerological problems since 1990. I felt pulsations in my finger tips when I first came down with CFIDS in 1990. I had been in 2 car accidents back to back the year prior, so my docs thought I was just after a settlement. I am not trying to scare you, just relating my experience. The doctors never treated me with any respect. Until I met my CFIDS doc who told me that I was his typical patient. I felt so much better. I needed the reassurance from a medical professional that understood what was going on with me and understood it.

Do you have trouble sleeing too ? I have nocturnal myoclonous, meaning I jerk in my sleep when my body goes into REM. I didn't know I was jerking in my sleep until I had a sleep disorder test run. I was just exausted and sleepy during the day. I always figured the neurological problems were connected, but no nuerologist I've ever seen has said they were. I never found a good nuerologist.

I've been on the gluten free diet for 5 months now. I noticed immediately that my jerking lessened and I no longer felt hyper. Wheat tears up my stomach everytime. So, even though I don't have a physical diagnosis, my GP diagnosed me via the diet.

Good luck. And try not to listen to those people who are telling you that you are nuts. THis is a good board for support and info ......

Marcia

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Guest nini

Oh yeah, I forgot to mention, I got those "zaps" too, and I had "non specific seizure disorder" and those "jerks" when I would go into REM sleep... since I have been gluten free all of the neurological issues have seemed to dissappear.

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LOL.... Trust me! I know all about those who thing I am crazy. I followed a magazine's advice one time and took a written list of my "ailments" to my gyno, thinking my issues may be womanly related. BIG MISTAKE She said I needed to see my PCP because she felt I needed to be put on anti-depressants because I was too focused on my symptoms.... :blink:

I do occasionally jerk myself awake (not super often though), but suffer from restless leg quite often. Also, I brought this up to he neuro, that my fingers on both hands tingle and are numbish. Not numb and not sleepy tingling but a constant feeling that i am always aware of. He didn't have answers for that.

NINI you are so right. And I know it...inside. But, I just also posted in the Children's thread and for my son as well would like to pursue a diagnosis for me so it will be easier to pursue a diagnosis for him, if need be. (make sense) And either way it is just a month or two more.

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Guest nini

you have to do what is right for you and your family, I just wanted to share my experiences with you... my family thought I was crazy for YEARS... my mom still thinks I am a hypochondriac and that just makes my blood boil... considering that now that I am gluten free I am healthier than I've EVER been in my life and I've lost over 100 pounds... c'mon now? This was all in my head????

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Hungry ... Are u sure it is restless legs and not nocturnal myoclonous ? My doc using the terms interchangeably, but if you look them up, you'll see that people with restless legs have a crawly feeling in their legs while at rest. I never get that. Just the jerking, esp. when I try to take a nap in the afternoon. I use Klonopin at night to control the jerking. The med for restless legs is different.

And I have a funny to story about doctors not believing you ... I just had the "period from hell". My doc didn't believe me, so I insisted on having CBC's drawn twice in one week. Now, he believes me !!!

If it had gone on much longer, I would have needed a transfusion. Why, would a doctor think a person lie about a thing like that ?????? Oh, yeah, of course, I forgot, because I'm nuts. LOL

Nini ... You and I are so much alike on this. My family has always thought I was a little off because I couldn't maintain a train of thought. When I think about what a difference being gluten free would have made in my life in it really makes me sad, furious, stupified, etc.

Marcia

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Just would like to comment here - a couple of things

1) You're not crazy. My husband got it's an "all in your head" diagnosis several years ago from one of NJ's top groups of doctors.

2) He cannot tolerate anti-depressants as they make his body shake all over, uncontrollably. They stimulate his serotonin or neurotonin chemicals too much and his nervous system reacts by jerking his muscles involuntarily. All anti depressants do this too him (the newer classes of them like Paxil and Prozac etc.).

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Sometimes, with doctors, I think it boils down to this: Medicine is a Science and an Art. Unfortunately, sometimes we find "scientists" when what we NEED are "artists". Keep looking for your artists . . . . ((hugs)) Lynne

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I spoke with my brother this morning regarding his diagnosis of celiacs. ( He is only my half brother - same mother - )

He said he actually went in because he thought that somehow he had contacted AIDS, he didnt know how, but just knew he felt TERRIBLE and his blood tests showed that his body doesnt produce IGG or IGM, he said this is the second auto-immune thing his doctor found, cept that it isnt something you get? What ever that meant. He actually went to an Endocronologist who was the one who suggested that he may have Celiacs. Then followed up with the Gastro who diagnosed him.

We discussed symptoms and such, and I suggested that his children get tested. His third oldest girl has graves disease and I told him that I read that that could be caused by celiacs. He didnt know it was a genetic thing - or that she could have it as well.

It did make me feel better since my IGA was only "3" <20 normal; and my IGG was 4, where -11 to 17 was normal.

We spoke about getting a diagnosis and the doctor was telling him how sorry he was and my brother was like, no way! I'm glad to finally have a diagnosis! Now if only next week would get here sooner!

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Sometimes, with doctors, I think it boils down to this: Medicine is a Science and an Art. Unfortunately, sometimes we find "scientists" when what we NEED are "artists". Keep looking for your artists . . . . ((hugs)) Lynne

Lynne--you hit the nail on the head with that--how true :)

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