Hi I posted this question in another forum and someone suggested I check the Celiac forum out.
I do not have stomach pain unless I eat gassy foods, so I pretty much stay away from that but I do have the falling of the hair but at the same time my hair is growing long. I can pull on the end of my hair and it will come out especially when wet. I also have this near syncope on a daily basis if I need to pass gas or bowel movement. after bowel movement I am very very weak and hungry even if I had a meal a couple minutes before having a bowel movement. My main concern is the near syncope which comes on at any time and is very scary and sometimes last for hours.
Please, I need some insight into this. I have been to so many specialists and done so many tests with everything showing normal. Not sure whether a test was done for Celiac but I did do endoscopies and a Colonoscopy two years ago. I am now seeing a BioSet Practitioner(a few weeks now) who is trying to peel away all of my allergies to food but in the meantime I am still feeling that near syncope on a daily basis.
My near syncope started 12 years ago immediately after surgery while still in the hospital. I tried putting myself on a diet, eating only bland foods and was taking herbal supplements, for about a year I felt great with rare episodes of the near syncope. When I reintroduced my normal foods back into my diet the near syncope started again.
I have been tested by my primary doctor for food allergies which he said I have none but I have noticed that whole wheat foods make me very lethargic and when I went to the BioSet Practitioner he tested me and found that I am sensitive to wheat and asked me to go on a low gluten diet. I am so frustrated because it is 12 years going back and forth to the doctors and yet no one can find the cause of what am feeling. I have no other health issues, am not on any medication. I don't have pain or anything, just this feeling of unwell after the near syncope.
Go to enterolabs.com and order your own tests. From what I know about gluten. If you are allergic, a low gluten diet won't cut it! Any amount of gluten causes a reaction and it takes a long time for it to clear out of your system. Even after the gluten is gone your body keeps on producing anti-bodies and T-cells to it for a years.
I have been on a Gluten Free diet for the last two weeks and I have not gotten the near syncope, still get a bit unbalanced like but nothing like the feeling of going to pass out, still get nausea but nothing like the last 12 years. I am waiting to see a Celiac doctor in June but was told that I have to start eating foods with Gluten and I am kind of not really wanting to go back there
Thanks so much for your correspondence..I am still on the Gluten Free diet and got the near syncope only twice since and not as bad as previous times. Some days I am so great and others, doesn't matter what I eat I feel kind of weak in the muscles of the arms and legs..seeing a cardiologist..did an echo, blood work and stress test now am supposed to do a cat scan of the heart because my cholesterol is a bit high..LDL is 126..sometimes am so frustrated with the medical field not being able to find out after running so many tests for so many years but hopefully, I will find that one doctor who will do the right test and voila..lol
I don't know what near syncope is, but you have been found to be sensitive to wheat, so regardless of whether you have celiacs or not you should continue on your gluten/wheat free diet. It sounds like you have started feeling better, so I wouldn't start eating gluten again just to get tested because the tests are not real accurate to begin with. Also if you are not a celiac, it doesn't mean that you are intollerant to gluten and/or wheat. I would continue to stay gluten free, but keep us posted on how you feel.
I am still on the Gluten diet..still trying to figure what has gluten and what doesn't..I have noticed that even if some of the foods indicate that they are gluten free..if there is milk product in it I get sick...So far haven't gotten the near syncope like I used to but as soon as I take in something that am sensitive to, I get the stinky gas, bloating and fatigue..which last for awhile...still nothing compared to the past years...but I still hate that feeling. I am going to see the Celiac doc tomorrow so wish me luck. All my test with the Cardiologist came back ok..except for a mild abnormality(myocardial bridge) which she said was not the reason for my near syncope(presyncope or feeling like you are going to faint but not actually fainting. Today for instance, got up, felt great..drank how many glasses of water, had breakfast, went to make a BM, not complete..lol. Went out and stayed out for a few hours..when I got back was extremely hungry and felt funny after eating some hot cereal...BM twice after and weak muscles...only after eating again did I start to feel ok. Since I have been trying my very best to watch everything with the GF diet..the near syncope has subsided but when I eat something that gives me a reaction, I get a feeling of unbalanceness...like am going to fall or any head movement will throw me off balance...better, way better than the near syncope but still not a nice feeling.
Anyhow, hoping the Celiac doc will help. Will keep you guys posted.
Thanks for the information..it really helps knowing that there are others who feel the same.
I thought for sure I was allergic to wheat and gluten after years of gastrointestinal issues. This is just a shot in the dark and it might be a silly one at that. I have recently posted a question to the docs about whether or not wearing underwear instead of boxers is causing my body to, instead of killing off sperm, causing my body to, instead, poorly absorb nutrients in an attempt to reduce my body's energy capacity to protect my sperm count. Sounds a little silly, but nature does try to make reproduction priority #1 and some people may have different regulatory methods in an attempt to maintain stasis.
I am so sorry you are going through all this. I have what they have diagnosed (now) as "stress-induced drops". I was having what they called "near syncope" before I started the business of completely "going out".
Mine all started with lightheadedness, headache, sometime chest pain, and stomach problems (at which time I was diagnosed with having IBS or Irritable Bowel Syndrome). Eventually, I seemed to kinda "control" them somewhat by putting my head down between my legs as soon as I felt it coming on. It would ease off a bit, but what didn't ease off was the "unwell" feeling like you said. I was exhausted, not up to anything and just felt yucky. Over years and years I have had to deal with these "near sycope" events.
At the beginning of this year, I was unable to control them anymore and they got worse.
I would drop to the floor if standing, oftentimes getting hurt. If I was sitting, I would tip over and go out. This went on (the doctors had no clue) until an event in March happened right there in the docs office. At the first hospital they took me to, I was intubated and put in a drug-induced coma because I was fighting the tubes when I'd come out of the unconscious state. I was transferred 2 days later and was in that hospital for a week on an EEG video monitor (they thought I was having seizures). Since nothing showed up the whole time I was on it, I was discharged with the diagnosis of "stress-induced drops". I still have them, but since they relate it to stress, it becomes a "mental health" issue instead of a physical one. Therapy.
I am agoraphobic with panic disorder and have no rides as it is, unless it's an emergency. The few times I get to my doctor (for all my other health issues) is...you got it...stress filled and 9 times outta 10, I am going to go unconscious at some point. I am working hard on getting help for rides so that I can see a therapist for all this.
I forgot to mention...when these became bad to where I no longer could get myself out of one, memory became a huge issue. I didn't remember anything before, during or right after sometimes temporarily forgetting my own daughter's name. I would lose a full day at times if one would happen in the morning.
So, I guess what I'm saying, is please get someone to listen to you and let them know how concerned you are about this and find someone who will listen to you BEFORE it turns bad. Blackouts and loss of time is what happened to me and became serious.
I'm not saying what happened to me will happen to you, but if you have near syncope, it means not enough oxygen or what they call transient cerebral hypoxia (diminished oxygen). So, that is not good. Each time it happens, damage could be happening.
I hope this helps you. Print off this post and take it to your doctor if you think it will help them understand how serious this was for someone else and that you want to prevent, prevent, prevent.
I am sorry if this is too personal, and you don't have to answer here - just tell your doctor about it if so. Do you drink alcoholic beverages? Two reasons: it can cause the near sycope and it has gluten in it. I don't drink, but it was a question I was asked.
I do have both a lactose and gluten intolerance. As you can imagine, my diet is minimal. I am basically eating raw or steamed vegetables, fruit, deli turkey, Talapia fish, chicken if cooked plain (I garnish with fresh parsley, lemon pepper or Mrs. Dash, and cook in olicve oil) I drink decaf tea with honey for the most part, but I like coffee with cream - which I can't have - but I 'sneak in a cup' here and there. The aged cheeses or 'hard' cheeses they call them are okay and plain yogurt if it says 'contains live active cultures' on it (I make a fruit blend drink from that). Those are a few things you can have in your diet. I happen to have a nutritionist friend but there is all kinds of info on it on the net so scout around. That might help you as well.
Kindest regards and best of health. My prayers will include you.
It is normal for a celiac to also react to dairy products; but most of the time this is not permanent. The protein in dairy (casein) closely resembles that of gluten. Damaged villi in celiacs from gluten consumption cause this protein in dairy to cause similar reaction as gluten, and to not be properly digested in the intestines. Cutting out dairy and gluten will allow the villi to heal, and most celiacs can successfully reintroduce the dairy; but never the gluten.
Thanks so much for your suggestions and input. I went to the GI on Friday and he suggested that I put the Gluten back in my diet for two weeks after which he is going to do an endoscope of the small intestines to determine whether or not I have any problems as to being Celiac or just Gluten intolerant. I was supposed to start immediately but am so scared to eat the bread(he said that all I would have to take is a slice of bread a day for two weeks). I just don't want to feel that near syncope. Although, the doc feels that I don't really have a gluten problem from my EGD & Blood reports from other GI docs but because none of the others performed a biopsy of the small intestines he will try. I am really scared to start the Gluten again. All the doctors that I go to and complain about my issues don't understand why I don't have pain. I realized many years ago that the gassy foods like broccoli, cabbage etc ..gave me gas..so I totally eliminated those from my diet..milk, I haven't had in years because my stomach totally could not handle it. Many years ago I would get these horrible pain in my stomach but since stopping the oily gassy foods that have gone. I have realized that this near syncope has evolved..when it first started, I would get the near syncope and I immediately needed to relieve gas in some form or another..when that was out I felt better...throughout the years it would go away from me being on a restricted diet(my own from what I felt was bothering me) as soon as I went back to eating everything it got worse..I had no clue about Celiac or Gluten free until about 6 weeks ago(but somehow over the years I must have been putting myself on a gluten free diet which helped me unknowingly). A couple years ago what started after the near syncope was the total feeling of fatigue which would last for days and that scared me even more because it totally drained all of my energy, yet still I still fought it and continued with my life(going to see one GI, Neuro, Endocrinologists, Cardiologists etc.after another without them having a clue what was wrong) complaining to my family on how tired and week I felt after the near syncope and realising that it occured after eating certain foods..that's when I googled the gastro forum and someone told me of the Gluten Free diet...thank God for that..it has helped me tremendously...but now I have to do this again to determine
Well, you hang in there. We all get scared over these things. It's the not knowing that gets ya. Keep us informed will you? I do hope they help you get to the bottom of this. You need someone in there helping you. It's all good to try these things on your own and all. Kudos for that. I mean that. I just wish someone in the medical field could take you by the hand and walk you through this (don't we all?). Continue what works for you, but don't forget to accept whatever help they give you so that you can feel better. Okay?
In my thoughts.
Well, it is now Wednesday and I was supposed to have started putting the Gluten back into my diet but I just can't. I am so scared of feeling the way I did before that I just can't....this is so ridiculous..I doubt that I will do the endoscopy of the small intestines because am too scared to start eating Gluten again.
How are you doing? Were you ever tested for Celiac and if so was it before you started getting the near syncope or after? I too can't have milk products, it does havoc to my stomach, yet still my doc says am not allergic to dairy...but am guessing that I am probably intolerant..don't know anymore. Do you still get the syncope? All these weird illnesses take a toll on the body as well as the mind..eventually making you such a nervous wreck that seeking psychiatry help is the next step. Hopefully, I get some kind of relief this year..I am trying all the barious specialists..my next step is the Neuro then the ENT.
(no longer llm2000)
On the 'near syncope' yes, I absolutely still have them. I can only pray for the day I wake up and don't have one. My anxiety/agoraphobia/panic disorder paralyzes me all by themselves; add into that the fear of a near syncopal event and/or losing control of the bowel in public (which has happened to me),I don't want anything to do with the outside world at all anymore - haven't for a long time.
I was going to the docs when I absolutely had to - for cholesterol and thyroid labs, or Xrays when I fell and hurt myself, but now I don't have rides (yet) and I just got a twinge nervous thinking about going again while I wrote this. That is how bad it is with me.
I am so scared as well. I'm sick and tired of being sick and tired and really,really, super really, sick of the medical field. I am ashamed to say I worked it for 30 years.
I have been to the Psyc doc who put me on a humungous amount of pretty serious meds and when I was in the hospital they took me off two right on the spot. I was over-medicated. The third one went the following week. Just this month I got off three other meds. I was taking (per drs) 25 pills a day (more if my anxiety was high) and I am now only taking 7. I did that. Since I don't go out, I dealt with the withdrawls alone (which surprisingly were not that bad - migraines, shaking and crying tons!). The dr has no clue I'm off all those. Other than my 'chill pill' Ativan - I take only one med that is considered a Psych drug now, Remeron, which helps me sleep through the pain I have. Isn't that awesome?
On the celiac:
Contradicting my previous statement of "It's the not knowing that gets ya" sometimes I feel like, " no more tests - I don't wanna know!" LOL
In 2007, I had an UGI (upper gastrointestinal series), SBFT (small bowel follow through) a colonoscopy and endoscopy because of all my symptoms and eventual black tarry stools which turned out to be 3 ulcers with a stomach bleed, thankfull resolved now. (caused by all the NSAID's I was taking)
I, like you, took it into my own hands at first. I did what they call a "rule-out" or "elimination" test. (you can do this on your own - sounds like you have a little bit) I would eat something, or delete something from my diet and be aware of what bothered me or not. Came down to dairy and foods with gluten.
Then in March when I was in the hospital for that week, they ran tests GT, IgA and IgG and immediately put me on a gluten free diet and I've been on it ever since. I no longer get the bloated, gassy, painfully tight abdomen - and "oh what a relief it is!" LOL
I do not blame you (trust me) for not wanting to put gluten back in your system for even a second. Try to keep in mind though that it is a temporary thing and they absolutely need you to do that to properly diagnose you.
Boy this got long. sorry. I do that and don't even realize it. It's good going back and forth tho. It helps doesn't it?
it's just that I don't get the near syncope anymore since being on the Gluten Free but I get vertigo..lol..this thing is getting so ridiculous that it is funny. I am seeing an ENT on Monday and a Neurologist on Wednesday. I also am getting a holter monitor next week and my doctor wants me to try eating gluten when I have it to determine whether the gluten is the cause of my near syncope or it is my heart. My doctors said that they have never heard of Celiacs getting near syncope...is that true?
I don't know about that. I don't particularly think one probably has a direct correlation with the other, but I also don't think you can say no Celiac has near syncope, either. For one example: Celiacs have a hard time eating (duh! lol), simply because of the nature of the disease, so if you don't eat healthy (or at all - to avoid the discomfort, etc), it seems reasonable to me you'd get that all too familiar weird sensation in the head - wooziness, dizziness, lightheadedness, weakness, topsy-turvy-like-you're-going-to-fall-over feeling, right? Also, what is to say you don't have something else going on causing the near syncope at the same time as the Celiac Disease is diagnosed? I don't like blanket statements like that. JMHO
BTW - on TV, Tues or Wed(?) I heard someone talking about fainting (which is becoming really common for some reason!) and they said what used to be called Near Syncope is called Pre-syncope now - have you heard this? Just curious if I heard right, so I looked up pre-sycope and it is just like it sounds - prior to a syncopal (fainting) event. I looked up near-syncope and it seemed to always say "near syncope/syncope" like they were the same, so maybe it's right, I dunno - just weird is all.
Anyway, be sure to let us know about those tests and what they find or don't etc. K
I saw the ENT dr and he said that my jawline was kind of misaligned so that maybe the cause of the falling feeling..unbalanceness. He recommend I do a hearing and balance tests which are both scheduled for next week and week after. I saw the Neurologist who spent like 5minutes in his office examining me and recommende that I get an MRI and ENG, the latter of which I am scheduled to do this week and the holter monitor is being placed this week also. As per my Primary Care doctor, "please aggravate the situation". He wants me to feel the near syncope for the reading of the holter monitor..so he wants me to eat whatever food I believe causes me to feel bad. I am really going to try this time.
The ENT doc found everything to be perfectly fine...no lesions, no disorder, balance of nerves in both ears fine, hearing fine.
Did an EMG with the Neurologist and the muscles and nerves are fine on my right side which is what he tested but he would like me to see and autonomic neurologist who specializes in syncope...so I am trying to set up an appointment with him while waiting on the appointment in August with a GI doc who treats Celiac patients. In the meantime, I am writing this essay about myself for this doctor in NY who treats patients for all sorts of things that other doctors can't seem to find. He is supposedly like the TV character "Dr.House"....his name is Dr.Thoma Bolte.
Every test that I do comes back normal but I have never done a biopsy of the small intestines.
To answer your question..no, no one has ever mentioned Meniere's but I really don't get a spinning feeling. When I get the near syncope..it feels like am going to pass out..with the nausea, dry mouth, sweat..then I get the farting(stink) and then the diarrhea and then muscle weakness, hunger like never eaten before and just weakness for days. Now with the vertigo..I feel like I am going to fall or topple over and this only happens when sitting, standing or walking and when am on the phone...usually have to keep switching the phone from one ear to the next..very weird....but all this occurs if my stomach is upset from something I am eating or just ate.
Hi there. I also have trouble with near fainting, not so much anymore. I get it mostly from being overly warm. I can't have eggs-get severe joint pain, no dairy- casiene seems to be the problem for me, no corn- hives, candida infections, gluten- confusion, diarrhea, bloating, etc. By the time they came up with a diagnosis I was very ill and needed hospitalization for dehydration and bleeding stomach ulcers. My entire intestion sloughed... lots of fun! All of my tests actually came back negative due to the lack of gluten in my system. There is no way at all I can eat any gluten to do a challenge and my doctor agrees it would be not so smart... If you feel better then you must be doing something right! I am the most sensitive celiac my doctor has ever seen, everyone's symptoms will always be different since it is a unique reaction. I was diagnosed 7 years ago and my immune system regularly finds new things to hate without loosing the previous restrictions :/ For me, if I am unsure of the safely of a food, I don't eat it. Nothing is really worth eating to have a reaction since they last a week or more. You are sounding like you are having episodes of hypoglycemia. Have you tried eating more frequently of good proteins? Chicken, fish, nuts etc? I also have dizziness from chronic fluid in my ears from allergies. Have you tried an antihistamine? Allegra, singulair type things? Hope things get better for you!
I have this too I guess. I didn't know what to call it though until I read your post. I sometimes jsut start to fall over, but catch myself before going completley down. Happens when I am sitting mostly. I have thyroidits also and I get hot and sweat especially after eating. I suppose the thyroid could be related to this near fainting stuff. Anyway, I hope you feel better soon.
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