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Hm... Any Advise?
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17 posts in this topic

I decided to post all my symptoms that I listed for my new neurologist that I recently visited at Columbia University Neurological Institute in New York. It sounds to him as autonomic dysfunction. I asked my regular doctor what this mean. She told me that this is very hard to diagnose and also very hard to find any medicine that will help. She told me that I will have with age stronger and stronger episodes- this is scary for me. I can't get it out from my head.

The list is long, but I hope somebody would have some advise for me.

1. When I eat something then I have this reaction: I will be very dizzy, like I drank 1 cup of very strong alcoholic drink. I would have a feeling like I will faint any second. I need to lay down, or sit down because I will faint.I will feel something like pressure with dull mild pain in back of my head where head is attached to spine and also on top of both sides of my head. I will feel like this for the all course of the episode.My limbs- arms and legs, would get very weak. I will be pale.Sometimes I would feel pain in middle of my chest, around hearth.I'm very weak and not able to move. I can't even hold my head up, even my neck is weak. I can't see nothing for 1-3 minutes from the beginning of episode. When I lay down, I'm able to see again after a wail, or I will exercise my feet and after 30-60 seconds I can feel "burst" of something and I will open my eyes.

Later I feel like I'm on sleeping pills. I will have strong palpitation. I will be dizzy- milder, my memory would be bad, my mind wouldn't work like it should. It's like I have Alzheimer: I can't think, my mind is blurred, I have problem with memory. If I will read, watch, or need to do something that require thinking, I'm not able to do that, I don't remember anything. I will turn and I don't know what people sad, did, I have brain fog. I can't drive my car, I can't function properly. I will just lay on couch, or sit in chair without movement.

I will be very, very cold. I will put sweater on and cover myself with blanket, but I would be cold for 30-90 minutes anyway. If I have a very strong episode, then I will have chills. I will wake up from asleep 1-2 hours later. I don't remember that I even wanted to fell asleep, but I will sleep very hard. I can't hear anything.

Time:This will happen right after any food or drink, and also 2-3 hours after (I would be only dizzy, feeling like I will faint, I will have palpitation, blurred vision, brain fog- memory problems, I need to lay down, I would be pale, very weak, and not able to move).

Every day is different. I will have two weeks with milder reactions (sometimes non), or two weeks when I will spent all day in bed, or on floor not able to even drink plain water.I will wake up in the morning and I know right away what kind of day I will have.If I have a bad day, then I don't feel hungry. I don't want to eat at all. I feel full even I didn't eat anything.

2. I will pee a lot for about 1- 2 days. My urine will be white like water. Usually a half of day every 15-30 minutes and then later every 1, or 2 hours. I won't drink anything and I will pee like this. I will have only 1 cup of water in the morning. After this, I will drink to hydrate. It's usually 2 days after my period, but not always(60-70 %). When I don't consume enough of salt, then this will happen any time, not just in the morning. This was the reason why my endocrinologist checked me for diabetes insipidus.I will eat salt (potato chips) to stop it, but I'm not able to do that. After this I know that I would have proximately 2-4 bad days. I will have stronger reaction to food, or just to plain water.

3. I always needed to lay down on the left side because on the right side I felt very nauseous, sick to my stomach. I needed to turn right away. I couldn't stand this feeling. Not so often anymore. Maybe because I'm not eating so often, or the portions are to small to cause a major problems.

4. Do I have both types of dumping syndrome- rapid and slow, or something that is mimicking this syndrome? Rapid because when I eat something bigger, than I will be dizzy right away, or sometimes even in middle my dinner. I can't move from the table to lay down. I feel like fainting, I'm dizzy- like very drunk, pale, I don't see nothing. I will just hold my head with both hands, or rest on table and wait for 5-10 minutes and then go lay down. I have this specially with cold, hot, sweet, or bigger dinner like: 1

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I would like to add this:

http://www.healthy-h...e-symptoms.html

Check the video on the bottom of this. This is me, but my reactions are around 50-60% from hers on a very bad day. Thank God!

http://www.dinet.org/symptoms.htm 70% from this list I have.

I don't know what to think, what to do with all this.

POTS is treatable, dysfunction is not.

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Oh sweetie..it sounds like you are having such a rough time. :(

From the site you linked it seems like you fit the description? What is your Dr. telling you? If your Dr. can't help you..maybe you should see if you can get a referral to someone else or one of the major health centers like Mayo or Cleveland Clinic if you're in the US?

If you're not in the US, surely there must be somewhere you can go for more help?

(((hugs)))

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Oh sweetie..it sounds like you are having such a rough time. :(

From the site you linked it seems like you fit the description? What is your Dr. telling you? If your Dr. can't help you..maybe you should see if you can get a referral to someone else or one of the major health centers like Mayo or Cleveland Clinic if you're in the US?

If you're not in the US, surely there must be somewhere you can go for more help?

(((hugs)))

I live in New Jersey, in the USA. After two years now I finally found a doctor that understood my symptoms, didn't offered Prozac just to get me out of his office like others did.He is a director at the Neurological institute in Presbyterian Columbia University Hospital in New York.

I saw many doctors, I had many tests and excessive, even repeated blood work for many things that I never heard of. Almost everything came back negative which prone doctors to dismiss me.

Only one doctor believed that I was sick. He saw me for 3 years before prior this and he knew that I was sick. He tried to do his best. He went even beyond his expertise (ordered tests that he shouldn't order). He sent me to a neurologist , but he wasn't able to diagnose me because everything was coming out negative.

I made video from my episodes and showed to him. Only then he believed that what I'm telling him is real.

He suspected POTS, but told me that if I have it, he can't help me.

When I called to find out the results from ambulatory EEG, he told me that he told about me to his co-workers and they think that I should see the Doctor Weimer at Columbia.

I waited for the appointment 2 and half months.

He gave me pills- Mestinon. This medicine is listed as one of the pills that people should take for POTS.

All this happened after virus infection in February 2010 and from that time I got much worse. But when I have a great day, I will bake and cook and try to convert gluten recipes to non-gluten ones.

Thank you so much for your suggestion. I was just overwhelmed with all this, specially part that I will get even stronger episodes with age. I'm just 36 and I feel like old grandma already.

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Ugh. That sounds awful.

Your post is a bit of an information overload for me. :huh:

Here is a bit on salt craving. Addison's is mentioned.

http://www.mayoclinic.com/health/salt-craving/AN01597

This is an Addison's symptom list. Some match. Addison's would mess up your autonomic nervous system pretty thoroughly.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001416/

My acupuncturist was telling me last week that in Ayurveda you are supposed to lean or lie to the left after eating. It puts the right nostril higher so you breathe through it which is good for digestion. Weird, huh?

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Hi,

I'm really sorry to hear you are struggling right now and I hope it gets better for you. I just wanted to let you know that I had orthostatic hypotension, salt craving, palpatations and autonomic dysfunction. I had to have a pacemaker put in because my heart would slow down inappropriately too much. I also suffered from weakness and had trouble with stairs, walking far or exercising. Then in one month I started to lose weight fast. At first they blamed Celiac Disease until I started getting worse, even after going gluten free. It all turned out to be Addison's Disease. If I were you, I would ask your doctor to test AM Cortisol and ACTH or ask for the ACTH Stim test. I'm not saying that is what you have, but it sounds similar to my story and it could be related to your adrenal glands. It is better to be safe than sorry. I wish you the best!!!

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Hi,

I'm really sorry to hear you are struggling right now and I hope it gets better for you. I just wanted to let you know that I had orthostatic hypotension, salt craving, palpatations and autonomic dysfunction. I had to have a pacemaker put in because my heart would slow down inappropriately too much. I also suffered from weakness and had trouble with stairs, walking far or exercising. Then in one month I started to lose weight fast. At first they blamed Celiac Disease until I started getting worse, even after going gluten free. It all turned out to be Addison's Disease. If I were you, I would ask your doctor to test AM Cortisol and ACTH or ask for the ACTH Stim test. I'm not saying that is what you have, but it sounds similar to my story and it could be related to your adrenal glands. It is better to be safe than sorry. I wish you the best!!!

Sometimes I feel like I have the Addison, but the eating- digestion doesn't fit the profile. I don't know.

I didn't want to post all my problems, but I'm happy that I did.

My endocrinologist tested only Aldolase serum, renin activity- normal. Then he ordered urine test for osmotality- came back low and urin sodium which came back high, or higher. He tested me for diabetes insipidus. I had water deprivation test. http://renalfellow.b...ation-test.html It was normal.

This is what happened afterwards:

****I had Water deprivation test. Nobody were able to tell me, if I can drink water before the test. I didn't drink nothing from 10 pm until 2 pm the next day.In the hospital nurse took from me 18 tubes of blood and I pee every hour, or 45 minutes. I felt dehydrated, dizzy when living the hospital. After I got home, I drank water, Gatorade, and currant juice. I ate l empanada for dinner and before l egg, 1 hot-dog and l slice of bread.I spent all day in bed. I was very weak, dizzy, feeling like I will faint any second, I had palpitation, specially with movement( just bathroom visits), not able to stand, very, very weak, tired, feeling like on flu.

Next day was the same thing. Not able to even drink any water, or eat anything. Feeling pressure on my chest and have feeling like my hearth was working very hard, like somebody was sitting on it. I was not able to move, a few steps were causing blackouts and fainting feeling. In the evening my family forced me to go to the ER. They took another 3 tubes of blood. Everything was perfect. I had only low blood pressure 102-52-60, but not emergency low. They gave me one bag of fluid and I felt better, fresh. I had muscle spasm on right side between breast for 14 hours when I got home. I felt it over night, I wasn't able to sleep. It always woke me up.

For the three days everything was the same, until Saturday- the last day that I was very sick. I didn't eat nothing for 5-6 hours, I just drank some water because I needed to take my son to school. I craved salt in huge amounts. I needed salt. I didn't pee so much during these days, but Sunday, Monday, and Tuesday I pee all day, every 15, 30 minutes, or every hour. I also had palpitation many times and I felt my hearth to skip hearth beat and then beat twice very quickly.

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Ugh. That sounds awful.

Your post is a bit of an information overload for me. :huh:

Here is a bit on salt craving. Addison's is mentioned.

http://www.mayoclini...craving/AN01597

This is an Addison's symptom list. Some match. Addison's would mess up your autonomic nervous system pretty thoroughly.

http://www.ncbi.nlm....lth/PMH0001416/

My acupuncturist was telling me last week that in Ayurveda you are supposed to lean or lie to the left after eating. It puts the right nostril higher so you breathe through it which is good for digestion. Weird, huh?

I apologize for the size of my story. It is just 1/3 from 12 pages that I gave to my new neurologist. The list of doctors tests, findings and appointments is missing.

Here is the short version:

Blood for: diabetes- two hours test, normal glucose, hypoglycemia, hyperthyroidism, hypothyroidism, pancreatic hormones, Giuliani-Bare syndrome, Lyme disease (checked 4 times), Lupus- many types, B12- pernicious anemia, hepatitis a,b,c , Addison disease- endocrinologist told me that I don

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I still say..see if you can get a referral to Mayo Clinic. They accept most insurances. It couldn't hurt to look into it?

It's really hard when your tests aren't absolutely definate one way or the other. So many of us here have been misdiagnosed for other things over the years. Many of us get frustrated and it seems like the Dr.s don't belive us?

It's good that you filmed your reaction so they could see what's happening.

Maybe you have more than one thing with overlapping symptoms going on?

I hope they can find some answers for you and you can get feeling better. You're really having a tough time. Don't give up!

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Addison's should not be too hard to rule out.

I'll ask my acupuncturist about autonomic nervous system balancing for you next time I see her.

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Addison's should not be too hard to rule out.

I'll ask my acupuncturist about autonomic nervous system balancing for you next time I see her.

Thank you. I got use to live like this, but sometime I will get angry at the situation and I'm trying to look for the answers. Like now.

I turned to you for help.

Thanks again.

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Thank you. I got use to live like this, but sometime I will get angry at the situation and I'm trying to look for the answers. Like now.

I turned to you for help.

Thanks again.

Don't ever settle with this illness or "get used to living like this" - you are fighting for your life literally, don't ever give up!

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You may want to check out this book

Bernstein Diabetes Book

Or consider asking a question on the Bernstein Diabetes Forum. I am not saying that you are diabetic or that this is a blood sugar problem; I just think there's info on that issue in the book and on the forum that may be helpful to you.

an overview of causes:

http://www.dinet.org/what_causes_pots.htm

Another possible source of info for you is the Pituitary Network Association. Pituitary issues are surprisingly common and can have a wide variety of effects, such as Addison's. These tumors are benign, but difficult to diagnose.

http://www.pituitary.org/medicalresources/pediatric_hormonal.aspx

Best wishes, and please keep us posted.

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Don't ever settle with this illness or "get used to living like this" - you are fighting for your life literally, don't ever give up!

After many doctors visits when doctors looked at me like I was looking for illness, or attention from my family, when they tried to give me antidepressants for my "anxiety", I gave up. It happened for the past two years many times already. One doctor ordered blood work for celiac disease that came back negative after 3 months on gluten-free diet. He also checked pancreatic enzymes- negative too. I told him that nothing changed and that I still have major problems with food. He listened me, smiled, rolled his eyes and told me: "Try to eat everything and come back in a month." For what? He didn't even mentioned fructose intolerance, SIBO, food intolerances or allergies. I wasted $300,-- on this?

Or other gastroenterologist prescribed medicine for relieving gas and right away Prozac. When I was leaving, he handed me the prescriptions (out of blue) and told me twice: "Take the Prozac!"

Hmm

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You may want to check out this book

Bernstein Diabetes Book

Or consider asking a question on the Bernstein Diabetes Forum. I am not saying that you are diabetic or that this is a blood sugar problem; I just think there's info on that issue in the book and on the forum that may be helpful to you.

an overview of causes:

http://www.dinet.org...causes_pots.htm

Another possible source of info for you is the Pituitary Network Association. Pituitary issues are surprisingly common and can have a wide variety of effects, such as Addison's. These tumors are benign, but difficult to diagnose.

http://www.pituitary...c_hormonal.aspx

Best wishes, and please keep us posted.

Just the first page explains different things that you can have from diabetes, or not- autonomic dysfunction. Thanks for your suggestion.

I got funny story about the second page. I had second tilt table test and the cardiologist who ordered this test thinks that I have POTS. I showed him the printed version from Causes of POTS with marks what was checked already and was negative. He asked me: "Who gave you this? You shouldn't look at some stupid papers. Here, take this. That is what you need to read. "

I took the papers that he gave me, put it into my folder and came home. When I checked what he gave me, I got nice surprise. He gave me the printed version from the same web-page. It was overview + what helps. HUH

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I've been reading a little more about Addison's because I'm afraid I'm having adrenal issues. Along with salt craving, dizziness, nausea, and POTS are all symptoms. Addison's is autoimmune so as celiacs we are at higher risk.

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I can't really answer your question. All I can tell you is that my spouse was checked for a pituitary tumor and I ended up reading a lot over at the PNA, but this was a few years ago and my memory is not that trustworthy! The general consensus was that these tumors (benign!) are very difficult to find. They repeatedly stressed choosing your doc very carefully. I think you can call them and ask questions.

It sounds like the Addison rule-out should be the top priority.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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