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A Case Of The Crazies, Brain Cooties...


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25 replies to this topic

#16 Phayah

 
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Posted 01 November 2011 - 12:15 PM

Yeah, bloating and pain makes things a lot less enjoyable. I also love onions! I have often wondered if they might contribute to my migraines, eggs too. =(

I'm thinking if we are sensitive we might have to stay off casein as well. There are strong links between MS and dairy. Plus, I read that 50% of people with celiac/gluten sensitivity also have problems with casein (not to mention other things!). Crazy stuff...

I have my upper endoscopy scheduled for Friday at 9:00 AM. She scared me a little because she said it had been labeled as "urgent" and she also was recommending a colonoscopy as soon as possible based on my symptoms. I'm really afraid of being put to sleep for that. =(

I'm a little confused and worried that she was so quick to schedule these procedures. For 27 years my doctors just gave me laxatives, antacids, or tell me to eat better and I went on my way.
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#17 ravenwoodglass

 
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Posted 01 November 2011 - 01:23 PM

If you can try to get the doctor to do both procedures at the same time. That way you will only have one copay for the anesthesiologist and the procedure room. Don't be concerned that the doc is getting you in so quickly some of us have to continue suffering on gluten for a couple months before we can get in. If you have been gluten light then you have an even stronger chance of a false negative and even on gluten the chances of a false negative are higher than we would like. After the procedures are done go strictly gluten free. You don't need to wait for the results.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#18 Phayah

 
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Posted 01 November 2011 - 01:58 PM

Yeah, she wanted to try to do them at the same time but then she saw "urgent". So, she asked if I wanted to come for the endoscopy on Friday while they get approval for the colonoscopy because it would take longer to get. Luckily, I don't have a copay but it kinda sucks because my husband has to take off work.

Could a colonoscopy show evidence of Celiac disease as well? Do you think doing both procedures reduces the chance of a misdiagnosis? I know Enterolab has the stool test for "gluten sensitive" but is that something I could have checked at the doc's office or is the blood test just as good? I was also thinking of going back to my regular doc and asking for an autoimmune screening in case it's something else.

PS - I got in a huge argument with my brother because he thinks "asking for tests" makes me a hypochondriac. I was so mad. This is the first time in my life that I've felt maybe I'm not a hypochondriac. I've always just tried to ignore my symptoms because I honestly believed I was crazy and it was just anxiety related. Ugh... =(

Oh, I saw an article recommending long term migraine sufferers to get screened for Celiac disease. Nothing but Imitrex injections help my migraines.
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#19 ravenwoodglass

 
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Posted 01 November 2011 - 03:04 PM

Yeah, she wanted to try to do them at the same time but then she saw "urgent". So, she asked if I wanted to come for the endoscopy on Friday while they get approval for the colonoscopy because it would take longer to get. Luckily, I don't have a copay but it kinda sucks because my husband has to take off work.

Could a colonoscopy show evidence of Celiac disease as well? Do you think doing both procedures reduces the chance of a misdiagnosis? I know Enterolab has the stool test for "gluten sensitive" but is that something I could have checked at the doc's office or is the blood test just as good? I was also thinking of going back to my regular doc and asking for an autoimmune screening in case it's something else.

PS - I got in a huge argument with my brother because he thinks "asking for tests" makes me a hypochondriac. I was so mad. This is the first time in my life that I've felt maybe I'm not a hypochondriac. I've always just tried to ignore my symptoms because I honestly believed I was crazy and it was just anxiety related. Ugh... =(

Oh, I saw an article recommending long term migraine sufferers to get screened for Celiac disease. Nothing but Imitrex injections help my migraines.


Ignore the brother as it isn't going to do you any good to get angry with him. Brothers can be a real pain even into adulthood. Heck any family can be hard to deal with at times.
A colonscopy will not show any evidence of celiac disease it is the endo that you need for diagnosis. Enterolab testing can be part of the diagnostic picture for some folks but it is not in itself diagnostic of celiac. It can tell you if you are producing antibodies. It is not a test available through your doctors office as far as I know. The blood tests are conclusive if they are positive but not if they are negative. After you have the blood tests taken and the endo done then go ahead and go strictly gluten free. Please be aware that if you are already gluten light or gluten free your chances for a false negative are pretty high. Even on gluten you can have a false negative.
I hope the endo gives you some answers and make sure you keep eating gluten until the test is done.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#20 Phayah

 
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Posted 01 November 2011 - 03:52 PM

I have been eating maybe 1-2 gluten items every day for the last few months. I just had a 3 day gluten feast. I did go about a week without though. I've suspected for a long time I may have issues with dairy, eggs, soy, and/or various food sensitivities due to my relentless migraines. I guess I never really believed in the food connection until now. The problems I've been having the last year are kinda freaking me out so I'm getting serious about figuring it out.

I've been on the low carb diet about 6 months. I started having serious problems again a few months ago but I didn't think it might be related to food until I looked back. At first I thought it was an allergy but then I ran across Celiac which could explain almost everything. So, I did some investigating and found out the bars contained wheat. It seems like I added the low carb tortillas and bars around the same time my problems started.

Do you think that will be enough? I've had serious digestive problems since childhood and now neurological.

Either way, I've had most of the symptoms my whole life. I just developed new ones (24/7 brain fog) and the old ones are becoming worse. I also have two new symptoms that just developed within the last few days. I'm having an internal trembling in my chest/back?! The other is swollen glands but it comes and goes. It could be related to drainage as I've had this many times throughout my life. I don't really want to think about what else it could mean.

My symptoms could fit almost any autoimmune disease and some of them don't seem to appealing. Considering my family history (both sides) and risk factors I could end up with 1 or more. I just hope if I do have one, it's Celiac, because I can do something about that one. =D

The only other thing (besides autoimmune) I could think of as possibly causing the new problems in the last year is: extreme psycho or metal toxicity/sensitivity. I have had numerous fillings, root canals, and oral surgery. I also have a copper IUD + serious menstrual problems.

Do you think it would be over the top if I asked my doc for ANA and metal toxicity screening? Surely my CBC and other tests would be off if something like that was going on?

As a side note, it really pisses me off that I've had to spend all this time trying to figure this out. I wish docs could be more thorough and spend more time with patients who have systemic symptoms.
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#21 Phayah

 
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Posted 03 November 2011 - 09:12 AM

I'm SO angry! I called to schedule an appointment with my regular doctor. The woman asked me what the problem was so I told her the new symptoms I was having. She said, "Are they related?" I said, "I don't know. Isn't that what the doctor is supposed to figure out?" She said, "Well, if it's not related we have to schedule separate appointments." I replied, "Well, I'm not a medical doctor so I can't tell you if it's related or not." WTF?! I'm so sick of this.
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#22 Nen

 
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Posted 03 November 2011 - 09:59 AM

Geez, like you are going to make 10 different appointments for each symptom? What is with that nurse? It is kind of amazing how apathetic it seems how the medical field is becoming. Almost like no one cares to try to get to the root of the problem, just throw pills at you that won't really fix anything at all.

I hear ya though, I've through the years have had symptoms that have popped up (have had IBS for 10 years, then sinus problems added in, and just in the past year balance issues and body aches/pains that come and go). I am only 28. I just drag myself through life pretty much.
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#23 Celtic Queen

 
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Posted 03 November 2011 - 11:59 AM

I got in a huge argument with my brother because he thinks "asking for tests" makes me a hypochondriac. I was so mad. This is the first time in my life that I've felt maybe I'm not a hypochondriac. I've always just tried to ignore my symptoms because I honestly believed I was crazy and it was just anxiety related.


You are the best advocate for your own health. And you have every right to ask for whatever tests you think will make your feel better.

Iwas the one who asked my GP to run a celiac panel, not the other way around. A lot of other people on these boards found out either by asking their doctors for the test or by deciding to go gluten-free without any tests.

Ignore your brother. Follow your "gut" instinct.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#24 Skylark

 
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Posted 03 November 2011 - 01:58 PM

I'm SO angry! I called to schedule an appointment with my regular doctor. The woman asked me what the problem was so I told her the new symptoms I was having. She said, "Are they related?" I said, "I don't know. Isn't that what the doctor is supposed to figure out?" She said, "Well, if it's not related we have to schedule separate appointments." I replied, "Well, I'm not a medical doctor so I can't tell you if it's related or not." WTF?! I'm so sick of this.

Luv, lie thorough your teeth. "Yes, they're related." Obviously it needs to be sorted out in one appointment and if your doctor needs more time he/she will tell you to make a followup.
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#25 Sam81

 
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Posted 03 November 2011 - 03:39 PM

My first thought was that I had a food allergy but I didn't have typical symptoms. Either way, I did stop eating the bars that were causing me trouble. I had to because I ate them in the morning so they pretty much ruined my whole day. At my checkup the doc told me my sinuses were inflamed which was a surprise. I have post nasal drip, tinnitus, and ear congestion (that she didn't see), but not a runny/stuffy nose. She gave me Flonase but I haven't improved. I think the Flonase makes the tinnitus worse and I've mostly stopped taking it. The flesh in my nose is completely red. My reflux came back and even though I started Prilosec it didn't help. I've never had heartburn, just chest pain, reflux, and tight throat. I stopped taking the Prilosec a week ago because I was afraid it might contribute to malabsorption of vitamins/minerals if I was deficient.

I've been doing a lot of research on Celiac disease and the connection with multiple sclerosis and it seems like I might be one who would have to eliminate dairy as well. I eat a lot of dairy. My mother has an appointment next week and I asked her to get the antibody panel for Celiac. She agreed. I'm in the middle of our "cheat weekend" right now so I'm eating a lot of gluten. I have to go back to low carb for my weight issues but I will probably still be eating some gluten and a lot of dairy. Maybe I could start eating the gluten bars before I go to sleep.

My symptoms are so severe I will be dumbfounded if they find nothing unusual in the CBC/electrolyte panel. I already know if my periods get any worse I'm likely going to end up in the ER. I almost passed out, several times. I literally felt like I was bleeding to death. My problems could be caused by the copper IUD but it makes sense that having Celiac could have had an impact on a copper/zinc imbalance. It would also explain the parasthesia I was getting before the IUD, not to mention my entire life.

When I was pregnant I kept telling the doctors I was having persistent pain under my ribs (left side). One doc said, "There's nothing there. That's just your intestines." So, I thought "doh, gas". After pregnancy I continued having the pain but it was on the right side (mostly). That's why they did a full abdominal ultrasound (normal). Now it's just extreme bloating and intermittent cramping, particularly in the upper abdominal area. It almost feels like I'm pregnant again.

My brain fog is also extremely disturbing although it's slightly better when it's not that time of the month. I have it ALL the time in differing degrees of severity. It makes me want to crawl in the bed and close my eyes just to try to escape it.

I'm constantly dehydrated. No amount of water helps. It just goes in and comes right back out. Before I thought of Celiac I assumed I might have an electrolyte imbalance so I also asked for a blood test for that. My hair falling out is freaking me out too. My scalp is dry/scaly and sometimes I have a weird burning/painful sensation. I have muscle tension in my neck/shoulders that also burns. It's the strangest thing.

My mother truly believes something is wrong with me. She told me to listen to my instincts and don't let the docs ignore me. She used to tell me to get over it (lol)! I really hope she tries out the diet after her test. She supposedly has remitting/relapsing MS but I swear she seems worse every time I talk to her. I'm so afraid it's some kind of dementia that's getting worse. It will be so hard for her to do the diet because she is over the top crazy about bread. She once told me if that was all she could eat she'd be perfectly happy. =(

I've been reading through threads here and everything seems to fit me so well. I ran across a post with a picture of a baby who had "allergy cheeks" and it looked just like my son. He often has those red/splotchy cheeks, particularly after eating. His breakfast, snacks and some of his "convenience" meals contain gluten. My end game plan before I ever heard of Celiac was to convert to a Paleo type diet for the whole family so I will only have to struggle with the dairy part. My son is too little to care and my husband has been doing low carb with me. I'm fairly certain if I had never started a low carb diet I would never have noticed the relationship between food and how I feel.

It will probably be a while before I see the GI doc and neurologist, maybe a month. I will be checking in here though. =D


I have very similar symptoms to you. Dr's have given up on me claiming I too am a hypochondriac and prescribing me anti-depressants. I have just attempted the gluten free diet - 3 weeks now and it's helping. whatever it is - it's helping. Good luck and keep smiling... ...if you can.:rolleyes:
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#26 Phayah

 
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Posted 03 November 2011 - 07:48 PM

Thanks guys. I feel like I'm losing it with all the run-around.

Somehow I ended up in the ER today. It was REALLY scary. The brain fog has been slowly taking over and the past few days I've had some cognitive problems. I've been highly agitated, stuttering, losing my train of thought, forgetting really important things, and grasping for words. When I called the doc they told me to go to the ER.

On the way over I felt so terrible. I was weak, shaking, clumsy, confused, and gasping for breath. It felt like I might black out. I walked in the wrong door and someone ended up wheeling me over to the ER. My feet and hands were so cold. I could barely keep my eyes open in the bed because I was getting so sleepy. My arms would tingle after being up for just a few seconds. I'm so worn out now, I feel like I haven't slept in days.

I had an episode very similar to this 5-6 years ago. I also had a much milder one like this about a year ago. The doc checked my thyroid and found 0.25 TSH but normal T4/T5. She suspected Hashimotos or Graves Disease at the time but I moved shortly after that. My new doc said my TSH was normal but I don't know the actual results (one month ago). The ER doc also said it was normal at 0.86 but I told him my throat felt strange. He examined my thyroid and said it was slightly enlarged. I'm so lost right now, I don't know what to do.

He ran a bunch of tests but it was all so confusing at the time. I was having a really hard time understanding what was going on. I think it was a CRP, CBC, CMP, TSHS, CRD?, and some kind of urine sediment test? He said my C-protien was slightly elevated but too close to normal to indicate anything because it's a highly sensitive test? Also, they released me before the urine results so no clue on that. I'm not even sure if they were able to complete all the tests. I meant to get a copy of the results but I was so out of it I forgot. I'm not sure why but he suggested I might have some kind of arthritic/connective tissue condition which kinda freaked me out. He also said I may need to see an endocrinologist about the thyroid.

Oh well, I have an appointment with a general doc (not my usual) on Wednesday but now I just feel numb. I should really get some sleep.

If anyone has a clue, I am open for suggestions. =D
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