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cdfiance

Passing Out!?

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I posted here a few weeks ago about my fiance, Alex, who was recently diagnosed with Celiac disease. Things have gotten a little better. She's able to eat more and she's keeping everything down and hasn't had any glutenings but unfortunately, her malabsorption hasn't gotten a lot better -- still chronic diarrhea and unable to gain much weight.

A few days ago I heard a thud while Alex was in the shower and ran to the bathroom to find her lying unconscious in the bottom of the tub. It was one of the scariest moments of my life. I scooped her out of the tub and lay her on the floor and she quickly came to. She stayed woozy and pale for a few minutes but I wrapped her in a towel and held a cool cloth to her forehead and the colour slowly came back to her face. Alex said she didn't feel like she hit her head very hard but I carefully inspected her head for bumps or gashes to make sure. I couldn't convince Alex to let me take her to the ER to get checked out, but fortunately it seems like she's just pretty bruised and banged up.

She was able to get in to see her doctor the next day and her doctor thinks she needs to get intravenous iron until her intestine is absorbing nutrients better. Has anyone had this and found that it helped with their weakness and lightheadedness?

I don't know what else we should be doing to help prevent her from passing out in the future. Her stomach doesn't feel well enough to eat meat right now so it can be a struggle to make sure she's getting lots of protein for strength. Would light exercise (like walking) help build up her strength or would that just make things worse right now? I'm scared to death she'll pass out again so for now I'm definitely going to shower with her or keep her company while she has a bath. If anyone has any tips on how to help prevent her from passing out again that would be great.

Thanks,

Ryan

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I don't have anything to offer but my sympathies! Sounds like she's having a tough time, but it's lucky she's got someone like you to watch out for her.

Geoff


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

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If her iron level is low and her doc thinks she needs IV iron, I'd go for it! She may not be absorbing enough of it in her intestines or in supplements.

As she heals, she should get more energy and be able to tolerate more foods. In the meantime, brown rice and veggies are good. I'd be sure the veggies are well cooked and soft, too. Normally you don't want that, but I know if my tummy is feeling bad, I think they are more soothing. Can she tolerate chicken soup?

What about almond butter? Maybe some almond butter on gluten-free toast might give her the protein she needs.

She's blessed to have you to take care of her. Things will get better, it will just take time.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi,

I sympathize here with your gluten-free. I also had the symptom - if it can be called that - of passing out. I was passing out all over the place and it lasted until my intestines were healed and I was able to absorb the food and the nutrients. I was even passing out in bed in the hospital. Horrible. I would say make she drinks A LOT of liquid. Gatorade helped me a lot. Also try Pedialtye. I drank one a day for abnout 1-2 months. It helped a lot balance out things. Fruit flavor is the best.

Take care.


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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I posted here a few weeks ago about my fiance, Alex, who was recently diagnosed with Celiac disease. Things have gotten a little better. She's able to eat more and she's keeping everything down and hasn't had any glutenings but unfortunately, her malabsorption hasn't gotten a lot better -- still chronic diarrhea and unable to gain much weight.

A few days ago I heard a thud while Alex was in the shower and ran to the bathroom to find her lying unconscious in the bottom of the tub. It was one of the scariest moments of my life. I scooped her out of the tub and lay her on the floor and she quickly came to. She stayed woozy and pale for a few minutes but I wrapped her in a towel and held a cool cloth to her forehead and the colour slowly came back to her face. Alex said she didn't feel like she hit her head very hard but I carefully inspected her head for bumps or gashes to make sure. I couldn't convince Alex to let me take her to the ER to get checked out, but fortunately it seems like she's just pretty bruised and banged up.

She was able to get in to see her doctor the next day and her doctor thinks she needs to get intravenous iron until her intestine is absorbing nutrients better. Has anyone had this and found that it helped with their weakness and lightheadedness?

I don't know what else we should be doing to help prevent her from passing out in the future. Her stomach doesn't feel well enough to eat meat right now so it can be a struggle to make sure she's getting lots of protein for strength. Would light exercise (like walking) help build up her strength or would that just make things worse right now? I'm scared to death she'll pass out again so for now I'm definitely going to shower with her or keep her company while she has a bath. If anyone has any tips on how to help prevent her from passing out again that would be great.

Thanks,

Ryan

Dear Ryan,

It sounds like Alex's malabsorbtion has resulted in anemia. She probably was low on electrolytes due to the diarrhea. Gatorade and Pedialyte, which were mentioned by other members already definately is a good idea. Make sure she avoids fruit juice, because it can make diarrhea worse. They should also check her blood sugar. I had a couple of instances where I nearly fainted in the shower several years ago because of it. Hot steamy showers can be dangerous when you are unwell. I think you are great for being so supportive of your fiance. Many people treat us like paranoid freaks. It is nice to know some you "normal" people are nice!

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Ryan, my sister had iron IV's for 3 hours, every Wednesday for a couple of months in the beginning, then they told her she would have to have them once a month for life, yet once she went gluten free, things did improve and she has not had the iron transfusions for 6 years. Maybe all Alex needs is to get that iron built up and along with her gluten free diet, she will be ok. The IV's would be a good idea for a time.

When I had been gluten free for 1 1/2 years, I passed out just as Alex did. I was in a motel room, which had a handicap shower with a seat in the corner. I wasn't feeling very well and decided a hot shower would be good, so I got the shower going, climbed in and reached to turn on a little more cold water and that's all I remembered. Next thing I knew I was on the floor of the tub with cold water spraying on me. I did hit my head a good one, probably on that handicap seat on the way down and my hit my bad knee.

I feel that most of we celiac's have a very tempermental system that doesn't accept change well. I find if I stick to normal habits, I do much better. Up at the same time everyday, breakfast at the same time--everything the same as much as I can.

Is she taking vitamins? I feel we all need to take vitamins, probably for the rest of our lives. Nature Made is gluten free, they have a Woman's Plus Iron that may be a good idea for her. I think B vitamins would be a good start too.

Take care and Alex is a very lucky woman to have such a loving, caring sweetheart in her life!!!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I actually would fall asleep. Everywhere, anytime. During "V for vendetta" in the theatre, also "Saw". Even the doctors office. I was medicated for narcolepsy (which made everything worse as I don't have narcolepsy) after my doc had to wake me during our visits. My iron levels were awful, but now (7 mo's gluten-free!) my levels are all normal. And I'm not constantly falling down.

The point is: she's gonna get better. Just stick to the diet. I would do the IV as well, maybe it'll help "jump-start" her recovery. What others suggested was good. Just know that ur an amazing guy. I've got an amazing hubby, I KNOW what a powerful force someone like you is in recovery. You rock.

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I can't thank you all enough for your responses and input. I was a little freaked out after seeing Alex unconscious and thinking about how bad it could have been if she had been alone taking a bath or something. Your responses helped calm me down and your suggestions were really helpful. She's drinking pedialyte everyday and I think it's definitely keeping her better hydrated than plain water because her headaches have eased quite a bit. Alex had her first iron IV and it was a relief to get that under our belt since we were both worried about the possibility of a severe allergic reaction. She had no reaction and everything went well and hopefully it'll help with her weakness/fatigue.

Thanks again for your help. I'm still a little sick with worry and watching Alex like a hawk and making sure she doesn't shower or bathe alone. I hope she doesn't feel like I'm smothering her but I'm just feeling a little over protective right now. This board is a great resource and I think it's wonderful that all of you who have been through this are so willing to help people new to the game like Alex and me.

Ryan

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I hope she doesn't feel like I'm smothering her but I'm just feeling a little over protective right now.

I don't know about your fiance, but I kind of like that from my man. :rolleyes: My hubby is the same way. It's nice seeing a man showing that kind of tenderness and care for his love.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I'm so glad you found us here too. I would hate to think of you going through this alone.

I'm glad the IV went well.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I used to pass out a lot, in the year before I was diagnosed and the year after as I was healing. I drank a LOT of Gatorade and tried to eat lots of small meals. I still get really dizzy and have to lay down when I get severely glutened. Be especially careful if she is throwing up and not able to keep any liquids down. That is when I usually pass out.

I think she is very very lucky to have you. You're doing a great job taking care of her. :)


Bre

Age 29

Diagnosed (blood and biopsy) in 4/01.

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I used to pass out a lot, in the year before I was diagnosed and the year after as I was healing. I drank a LOT of Gatorade and tried to eat lots of small meals. I still get really dizzy and have to lay down when I get severely glutened. Be especially careful if she is throwing up and not able to keep any liquids down. That is when I usually pass out.

I think she is very very lucky to have you. You're doing a great job taking care of her. :)


Bre

Age 29

Diagnosed (blood and biopsy) in 4/01.

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Dear cdfiance,

It is wonderful news to hear Alex is doing a little better! :) We were all so worried! It sounds like low electrolytes were some of the problem. The Pedialyte certainly is great for that! Also, it is great to know she tolerated her first IV treatment! I think it is terrific you are so concerned about her. Many of us hope to be so lucky! So many others are less than understanding. One woman on here had her husband walk out on her after she was diagnosed a couple of weeks ago! She is in bad shape, and has four children to care for! I am glad you are not one of those! Love can heal quickly. Recovery is difficult. I wish my family would be more supportive sometimes.

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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I am very sad to hear of such a hard time your fiance is having my heart goes out to her...shes a very lucky women to have you by her side even more so now her being so sick...my hats off to you....i have expericenced alot of dizziness headches and passing out over the course of a year....matter of fact i was ill to my stomach last night and passing out and my acid reflex is really bad i was just writing it off as low sugar level....i have been tested for diabetis many of times and comes back negitive....my MD is on holidays till the end of march so the wait once again begins...very frustrating....soooo today will be a very slow day taking it easy.....

On the lighter side of things....you being of the male gender its very kind of you to offer your assistance when it comes to bathing ;) ...LOL....Keep positive better days ahead....its a long bumpy one ....well worth the ride.....

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Passing out may happen to celiacs but after being on tghe diet for a few weeks or months it will not happen again, that is my experience. i was even terated for epilepsy, now seeing the glutenfree diet helps my doctor says sorry.

geo

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No one has posted here for a long time but I'm recently diagnosed with late-onset, genetically transferred celiac disease. That was 2 years ago. I was 58 then. I live alone.

Due to the extreme measures I went to, I have had very little trouble since I research everything I eat. Three weeks ago, I had a serious, severe episode with all the usual awful symptoms, but I got so exhausted that I lay down on the floor for a while and that's when things really got bad. Soon, I got really disoriented, didn't know what room I was in, then didn't know how I would get to a phone to call for help and then I didn't know where I was at all. I could feel myself losing consciousness, and then I was gone, gone. I have no idea how long I was out but I came to, later, and was soaked, dripping in sweat and freezing, shaking cold. I wondered if my shivering brought me around because I was shivering violently.

There are no specialists in my area but I'll have to find out what to do if things get that bad again and I find myself alone when it happens. Does anyone wear a medic alert bracelet?

After I recovered several days later, I could only think of one possible culprit, a rotisserie chicken at a deli...but prior to buying it, I asked to see the label of the seasoning they put on the meat. There were no products listed that cause a problem. So I was so confused. Took a long shot and asked if the deli counter would call that manufacturer and ask if there is cross-contamination in the factory. Got the news there are 7 gluten-containing sources of cross-contamination on that production line. No warnings at all on the label. SO frustrating! Had I fallen when I passed out, it could have been deadly for me.

So that sure did scare me as I didn't even know that could happen. So while I don't wish it on anyone, I'm relieved to see it has happened to others. I'll sure have gatorade with me, and my phone if I get that ill again.

 

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That sounds really scary KJM.  I wonder if you have developed an allergy to one of the ingredients in the meal?  With a reaction that serious, it seems like allergy testing is needed.  I really think you should talk to your doctor about this situation.

My uncle uses a jitterbug flip phone.  They have a red button you press that autodials a call center for help.  The help center can get you an ambulance or fire department or whatever.  The red button can also be set to call a few other numbers like friends or relatives.  He has the red Jitterbug flip phone.  He has a strap to wear it around his neck if he wants.

https://www.greatcall.com/phones/jitterbug-flip-cell-phone-for-seniors


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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Part of what happens to me is completely confusion, anxiety, gut wrenching pains, loss of feeling in hand and feet, vomiting and even a few times collapsed unable to move for hours.  I invested in some medical dog tags with my blood type, mention of celiac disease and a list of all my allergies on it along with emergency contact information in case this happens outside my house.  Scares me thinking they might try giving me something if I collapse and am out of it with fog that might make it worse.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Thankyou to both gluten-free in DC and Ennis_TX. Seems extra safety equipment makes a lot of sense. I'm a Canadian so the flip phone idea would go to a call center that wouldn't likely be helpful to me where I live, but it sure is a good senior idea. And putting your blood type on a Medic Alert bracelet or tag is such a good idea also, along with the celiac. THANKYOU for the advice!

 

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Never even thought about passing out or about to pass out being in the myriad of symptoms of Glutenized.  Before the first episode last year to this date, there were a couple of times I was about ready to ditch it.  Got that "fuzzy" feeling, not really hearing anything, and tunnel vision.  One of the times, I was up in the choir loft during church.  Wasn't sure if I was going to make it down the stairs without collapsing.  Talk about freaky.  Hindsight is always 20/20.  More and more I think back to last year before things blew up and I kept seeing little things that could have pointed to the glutenizing.  Thanks for the posts. :) 

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