CarbQueen

How long did it take everyone after going gluten-free before all these issues cleared up? As a newly diagnosed Celiac mom struggling to homeschool 3 ADD, anxiety ridden Celiac kids, I really need to know, and to know what I may do to accelerate this healing! Any help?

It took me approximately 9 months of going gluten free before all my issues cleared up. I have been educating my 3 adult children for about 5 years. They have almost completely healed during those 9 months.

My condition was severe.

I went on disability and remained on disability for about 1 year and hope to return to college to retrain for the work force. I devoted those 9 months to monitoring my diet and taking care of me.

I want to date a celiac girl now that I'm gluten-free. Is it wrong to narrow my search by allergy?

On another note, I think it would be cool to have a gluten-free meet-up spot, restaurant or club. Maybe I'll be the one to start it. Just to cut-out all the extra-work when you go out to eat and drink, a dedicated gluten-free establishment.

Soon to come.

/\//\\///\\\RiceCube

I think it would be cool to have a gluten-free establishment.

Other intolerances/sensitivities are probably rearing their ugly head.....after a year of trial and error I discovered I was GI, THEN I diagnosed myself with Oral Allergy Syndrome before allergist confirmed it.

I'm allergic to at least 77 items to varing degrees. The primary are dairy, wheat, raw vegatables and fruit, as well as nuts and tree nuts. Extremely sensitive to yeast. Cinammon is definitely a no-no.

NAKUTAKIA MEMA QWA SIKU YAKO YA KUZALIWA, GNICK!!!! ( Swahili). . . ...... . . ..

Yes, me too.. . ... ...!

:lol: Paghteigh, I can just see you. . . . . . .

My 1st time back in months....this makes me wonder why I stayed away so long....I think I'm feeling much better now, thank you very much....also ready to give dating a try,again... lol!

You may have another food intolerance going on besides gluten. Soy, or nightshades (tomatoes) or something else.

I finally booked an appointment with an allergist after I initiated an eliminations diet 5 years ago. The list of allergens was growing. I was tired of the restriction,frustrated and desperate for answers.

I gave him a list of suspected allergens, and he added a few that I suspected. The test was positive for all of them.

Self diagnosed as gluten intolerant/carb addicted with multiple allergies. Allergist confirmed my suspicions.

6 months ago I started making meals from scratch from gluten-free free and organic products. gluten-free products were making me ill and ADHD.

Now, I have to inspect every package to ensure that they were manufactured in an allergen free assembly line.

I feel okay now, and hopeful that my digestive tract will continue to improve.

Its a real pain in the posterior, and I turn into a ogre when I have to be so picky. But, its way better than being ADHD, and told by friends that I'm being a so and so.

May '09

Gliadin IgA = 23

Gliadin IgG = 66

Feb. '10

Gliadin IgA = 15

Gliadin IgG = 61

19 Units or less:........Negative

20-30 Units:.............Weak Positive

31 Units or greater:.....Positive

There is some difference but not a whole lot. I'm not IgA deficient. I know the gliadin IgG is positive still, so should I be looking for hidden gluten or cross contamination? I'm having a hard time with instilling any more rules on the husband and children. I know he is willing and the kids will adapt just fine, but he won't be completely happy about it. I had a normal gallbladder ultrasound, so I'm going to probably have the Hida next. I feel the best when I don't eat anything. About 15-20 min. later my stomach is bloated up and it seems to take forever for it to empty. Could other food intolerences cause this? The thought of giving up anything else, well frankly just sucks to me. I'd do it but wouldn't be happy. How would I start out eating to figure out what would be causing the problem? I know all of my medicications/supplements are gluten free. Shampoo/lotions etc. I'm unsure of but can check.

I had to give up cat sitting for a friend because the cat was making me sick whenever she licked me.

It was even harder to leave a relationship because of the gluttening from kissing.

As much as we love our SO they can make us deathly sick. He didn't wash his hands or brush his teeth before establishing contact. I was sick for 6 weeks after. He met me after work so his clothes were contaminated as well.

I withdrew from friends and relatives, then signed up for various support groups on the net, until my immune system improved. Loved ones can communicate with me via a prominent social group. I'm educating them while still maintaining a safe distance from contaminants. Even a hug will do me in.

It is definitely a crazy life we lead. Most people think we are paranoid. What's interesting is that this is hereditary. Those same people are suffering from allergies and food sensitivities, and they are living in denial.

Hopefully, they will learn something from us, and one day thank us for educating them about GI/Celiac Disease/Autoimmune diseases.

To begin with, I've been gluten free since February... prior to that I had all kinds of fun stuff, including Graves disease (hyperthyroid). Before I was diagnosed with Graves, heart symptoms were my main issue -- my heart would race like crazy, etc. Then I went hypothyroid for a while due to overmedication, and during that time I would always have chest pains and "skipped beats."

Well after I stopped gluten, my heart symptoms went away and I was happy as a clam. However, for the past month or so, I've been having a very irregular heartbeat more and more often. For at least an hour or more at a time, my heart will literally "skip" beats every 20-30 seconds. I can feel it while I'm feeling my pulse, plus I get that awful fluttery feeling in my chest. It doesn't hurt, it just makes me very uncomfortable, and I want to know why this is happening!

The weird thing that I can't figure out is that this seems happen most often right after I eat. I can't imagine that it has anything to do with gluten, since I'm very careful about staying gluten free... but do you think it could be some other kind of allergy that could produce symptoms like this??

Thank you in advance...

~Sara~

I started seeing a doctor, when I was about 10 years old because I would get an occasional irregular heart beat. He said it was a heart murmur and that I would grow out of it.

I went to another doctor because I wasn't convinced it would go away. Also, I complained of migraines and constipation. The doctor prescribed aspirin and laxatives.

For about 4 years I continued searching for a doctor to give me answers that satisfied my concerns. During that time I started eliminating foods such as dairy, most vegetables and fruit, and lived on a diet of mostly fish, rice and corn. I noticed the symptoms went away, so I just continued to subsist on those items.

Fast forward a decade, and a change in diet, that included fast and processed food. This change was a result of living a busy life in the city. Within 4 years my health deteriorated to the point my thyroid stopped functioning.

2 years later I returned to old diet but it took several more years before I started to recuperate from heart palpitations, panic attacks, irritability, skin eruptions, hives, sneezing, itchy eyes....

3 years ago I started to notice that within minutes of consuming certain food my heart would pound wildly. Last year, the frequency increased to the point that just about everything I touched or ate caused my heart to race. I knew my immune system was deteriorating.

I started to consume only seafood, rice and corn again. The symptoms have all but disappeared. I noticed a rapid deterioration of my body after consuming gluten. It was worse after ingesting carbs.

Irregular heart beats have been an indicator of allergies since I was a kid although most doctors didn't have a clue what was wrong with me or how to treat it.

Although I new I had multiple allergies that responded well to a change in diet I needed proof from an allergist that I am GI and allergic to many item.

I've since been diagnosed with Oral Allergy Syndrome, and Gluten Intolerant. The allergist recommended I remain on my diet.

No more wild irregular heart beats.

Please help. I've had a lot of health problems lately that I thought are getting glutened. I was diagnosed with gluten , dairy, and egg allergy 5 years ago through my natureopath and went off gluten and everything else. I immediately got better and decided not to go back on gluten to get further testing for Celiac.

Now I am getting sick a lot and doing testing with my GP to figure out if something serious is happening. He did an IgA test, my first one ever, and got the results today. I've been off gluten for 5 years now. The results were 5 <20. I asked if being off gluten affects the results and he said no and told me I'm not allergic to gluten and can "take that out of my mind". Then I read the results of the test and it says "False negative results may occur with IgA deficiency or gluten-restricted diet".

Does anyone have some in sight on that?

I shopped for a doctor who would listen to my concerns and understood celiac disease/gluten intolerance.

Now, I plan to return to a specialist I met 17 years ago after my thyroid stopped functioning.

I self diagnosed my condition of food sensitivities, then I went to a Naturopath to confirm my diagnoses. I returned to my GP to order blood tests, then requested a consult with an allergist.

The allergist asked my opinion and I said I felt I have multiple allergies with an intolerance to gluten/carbs. 5 years prior to that meeting I took the initiative to start an elimination diet. I estimated at least 40 food, chemical, and environmental allergies.

Last summer I discovered that I was developing allergies to fresh fruit and vegetables, and nuts. Until that time it wasn't an issue. That prompted me to seek answers. After much research I discovered that I am reacting the protein in several items.

I told the allergist that I suspect I am gluten intolerant because I break out in a rash similar to dermatitis herpetiformis and the halitosis returns as well as the indigestion which are the result of H. pylori. He said those are definite signs of gluten intolerance.

Last fall after 6 month gluten free, I decided to return to gluten. The result was severe arthritis and muscle pain. I met with GP for referral to doctor of internal medicine. He ordered blood tests which indicate arthritis and mixed connective disease.

Once I resumed gluten free diet the symptoms subsided.

My blood tests show 9.4 ELISA Units. Negative. That's because I've been gluten free 4 months prior to test. The allergist and I agreed that the tests would probably come back negative because of being gluten free for a lengthy period.

Blood tests indicate that there is no arthritis present.

He said I could consume gluten and test again, but I run the risk of symptoms similar to last fall. I am reluctant. He said I could just remain gluten free if I feel that my health is better without it.

I reacted to 30 allergens during the skin test. 20 of the items I was unaware of, and I have added those to my list of 40 for a grand total of 60 allergens.

The allergist gave my condition the name of Oral Allergy Syndrome.

The doctor of internal medicine is quite please my condition has improved and feels my prognosis is very good. I anticipate a full recovery.

I went for allergy testing on Jan 20th. Glutened a few days before appointment, and I prepared a casserole of suspected allergen ( items I haven't consumed for sometime).

Tested positive for 30 allergens. I began an elimination diet in 2005, by fasting for several days then introducing one food at a time. Had no idea this was considered an elimination diet, but I needed to know how many things I was allergic to. By the time I met with the allergist, I found about 40 allergens.

Apparently, there is a name for my condition - Oral Allergy Syndrome. Until, that day I called it the Crazy Making Syndrome.

My dear dr. turned to me and asked if anyone ever said I was crazy. I was stunned then I replied that yes on several ocassions some did say that to me. He told me in a very kind and compassionate voice that they should not say that to me. Then he proceeded to assure me that I'm not crazy, but very ill because I am just allergic to too many items.

That afternoon I cried for all the times I was told I was crazy.

It took a few days before I felt calm again, and all the allergens had left my body, and I am feeling normal again.

Now there is laughter mixed with tears.

I still count my blessings.

I went gluten-free a few months ago, and have been seeing improvement. But I'm still having a some (milder) issues and I think I'm getting traces of gluten somewhere. I've been doing my best with reading labels, but I'm still not an expert at it yet. I went through my pantry trying to find the problem foods, but nothing's jumped out at me yet.

Are there any unusual places to look for gluten that most people wouldn't think of? What are some foods that people commonly get unknowingly glutened with?

I just need some suggestions for what I might be missing.

Be careful with items that say traces of such and such. Especially, if you may/maynot be allergic to it. I am allergic to items that never bothered me before.

For several months I thought I was just getting gluttened although I was being ultra cautious. Then, a light bulb went off....I must be allergic to something.

After eating strawberries, nuts, and grapes for 50 years, I am now allergic to them. The grapes were increasing yeast infections.

I am scheduled to see an allergist next week to confirm what I already suspect.

During the last 3 months I changed shampoos, toothpaste, haircoloring products, makeup, soap, detergent, gum,etc.

I use gluten free vitamins and meds.

For the past 2 months I have been making every dish from scratch with organic and gluten free items. That brought the greatest relief.

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

I've had gluten intolerance all of my life. Whenever I started consuming too much carbs I would get the crazies/ADHD. The digestive tract converts it into an opiate/morphine type substance. This worsened as I go older.

2009 was milestone for me because I decided to kick the carb addiction. I wondered if I should check myself into the psych ward. Besides who goes ballistic when they can't have a piece of bread.

It took about 3 months to break the habit. I've quit smoking, and drugs with no problem. Never dreamed I would go through horendous w/d from a baguette.

Hang in there. 2010 is looking promising for me. For the first time in my life I feel normal.

I followed an elimination diet to determine which items were allergens. Once I eliminated those items all my symptoms cleared up.

I occasionally become glutened even with the best intentions. Those flares are unbearable. As my digestive system started healing the reactions to an accidental gluttening decreased.

It did start to get better. Hopefully, your flares will decrease in intensity.

Hi all, new around here, thought I would give the other perspective.

My wife was diagnosed about a year ago. She is also hypothyroid and has neurocardiogenic syncopy(fainting spells). The time leading up to her diagnosis was a very painful one. She had no energy, and frequently broke out in painful rashes(dh). The gluten free diet has helped her a lot, but she still gets contaminated. Our whole family has gone gluten free(I have two daughters from my previous marriage that is with us on weekends and vacations). We just don't want to take the risk of anything getting in her system. We don't eat out anymore and rarely eat as guests of friends and family.I still drink beer, but understand I definitely can't kiss her when I do, usually not until the next day and some vigarous cleaning. Her contamination cycle is heartbreaking. When she gets it, she breaks out in dh. Then she has about a week where her energy is completely sapped, and she gets depressed. Our nutritionist confirmed that when she's contaminated, she can't absorb her thyroid medicine, so she has no metabolism. Every time the dh comes back, we know we're in for a rough week.

It took me awhile to figure out the lifestyle changes that we would both have to make in order for her to get healthy. She's about to turn 40, and she's had this all her life. Her doctor told her it would take a couple of years to repair all of the damage that's been done to her system. It's difficult for me, although not nearly as difficult as it is for her. I think people need to come to the realization that this is not an allergy, or a digestive problem. This is a DISEASE, like cancer. It needs to be treated with the same kind of vigilance. It's tough, sometimes I wonder if I have the strength to deal with it the rest of my life. But she's the best thing to ever happen to me, so we keep pushing onSo please, cut your SO's a little slack. Explain what you're going through in no uncertain terms, and let them know that this is a lifestyle change. I don't know that everyone needs to live in a gluten free household, but I know that I would do everything in my power to help make sure she never gets contaminated again. But when she does, I summon all the strength that I have to help her get through it.

Hope you don't mind if I post this in the "families" section as well.

Wonderful

You sure lifted my spirit, with your thoughtful point of view - the SO.

I'm on the 3rd day of recovery from accidental glutening. My spirits are lifting, and I think I can venture outdoors again. The fear of being accidentally glutened can be debilitating even if my loved ones are doing their best to keep my environment clean.

Trying to balance my diet to ensure the synthroid circulates through my body is a challenge. First thing in the morning is the optimum time to take the pill, and then wait 1 to 2 hours before ingesting anything else. If your wife is consuming soy then she should wait at least 2 hours before ingesting soy liquids or caplets.

Many medications/herbal products interfere with absorption or synthroid.

My fainting spells subsided and circulation improved once I changed the way I utilized the synthroid.

Sometimes, my children feel like I don't appreciate the efforts they make to help me, especially when I behave like a bat out of hell after being glutened. Its the DISEASE.

We take some time out for day to pamper each other and chat in a friendly, pleasant environment. During that time I focus on them and let them know how much I LOVE, and APPRECIATE, everything they give me - patience, time and love.

Srthomas21 - Primarily muscle twitching and stiffness...throw in a dash of buzzing and some pain. My right leg ached pretty badly last night. That was a first and kept me up for awhile. I haven't noticed problems with motor control, clumsiness, or gait.

CarbQueen - How long did it take for your symptoms to subside after diagnoses? How intense/often was your twitching and when did it go away? Did the healing process take a longer period of time after diagnoses compared to isolated incidents of ingesting gluten?

Jean'sBrainonGluten - Your theory certainly makes sense. If indeed gluten is causing brain damage I would assume some sort therapy would be in order. I've been taking 400mg - 600mg of magnesium daily for nearly a month. I try to ensure that I at least have one banana a day. I've began some light stretching and leg lifts. Also, I've been using a heating pad on my calves which seems to do some good.

Thanks for the feedback.

After diagnoses my symptoms took approximately 6 weeks to start to to diminish. By 3 months I was feeling almost symptom free.

My twitching was almost constant and on a scale of 1 to 10 with 1 being the least, it was about 7.

Yes the healing took longer after diagnoses compared to isolated incidents of ingesting gluten. 3 months for recovery after diagnoses and 1 to 3 days for accidental glutening.

Jean's info is useful. I'm a survivor of an auto accident, and a patient of a physiotherapist, neurologist, cardiologist, head/nose/throat specialist, orthodontist, internal medical doctor, cranial sacral therapist, etc.

I was a pre med student before my thyroid stopped functioning. I learned to doctor myself.

Maybe at some point I will study naturopathic medicine.

Yolo, I am going to stick to my guns.

My dh will only take this seriously if I test positive for Celiac. I was tested after I eliminated gluten so it was negative. I may just have to fib and say I tested positive. I did have a positive saliva test for gliadin Ab of >100. The range for positive was anything >15. That should speak for itself.

I try stressing to him that gluten contamination can be just as dangerous even if I do not have Celiac. I have three books about gluten intolerance. There is also endless information on the internet. I asked him if he has done any research on gluten or if he'd be willing to do any. He responded "Not at this point." That pretty much says it all. He is staying ignorant so I am staying away. Not the best grounds for a marriage but than what is a marriage if it puts one health is at stake?

I am going to get out the books and mark pages for him to read. I'm guessing he'll still refuse but at least I am doing my part to educate him.

I am hoping when I get healthy that it will be proof in itself. I feel at the present time that I am making baby steps in healing. From what I am experiencing, when something sets my system off, whether it is gluten or some other sensitivity, I suffer close to 48 hours with insomnia and anxiety. After that time, I can just feel my body and mind returning to normal.

If he doesn't come around, will I stay around? That is the question!

Gluten Intolerance is a painful condition. Each time I am glutened my immune system is compromised. When I caught the flu, my reaction was the worst by far. I could not get out of bed for 2 hours because there was no one around to help me. I used the wall for support for a whole week to navigate my way around the house.

Every muscle in body felt sore and throbbed. I actually wished I would die. My joints burned and were tender to the touch. It took me 4 months of recovery.

My family,especially my children are now convinced I have a serious illness. Now, they ask about my diet, and changed their diet in the hopes of avoiding the same problems.

Hopefully your SO has that ahah moment, and start to be more supportive.

Yes, we have to count our blessings when we have a speedy recovery from being glutened.

Blessings for a healthy relationship.

My last boss had the same attitude. I thought he would be understanding since he has Chrohn's disease, and his boss gave him several sick days.

If you love your job, like I did mine, then I would tread very carefully. Some people at the work place do not like to deal with emotional people because they don't think they are trust worthy or reliable.

Your best bet is to continue to seek the support of people who have experience with these situations.

Thinking back over the last few years, I think my boss was able to keep his job because he didn't show any emotions and left the office whenever he felt overwhelmed, then returned whenever he calmed down.

I have been on disability for the past year while I learned to cope with my condition. Hopefully, I can return to my previous job next year.

The walking does make the twitching worse initially, but subsides after I resume gluten-free diet. I eases back into walking. Started with a block then worked my way up to 2k, 3Xs per week. Baby steps are the key. I've learned to be patient.

I practice yoga on a daily basis. It reduces the severity of my flares.

Cranial sacral therapy helped me with the muscle and joint pain.

I use an herbal product to improve the circulation of the blood.

Organic produce is a must, because the chemicals, pesticides or herbicides can cause problems with the muscles and joints, as well as ADHD symptoms.

Thank you for the support.

This is is about my 9th relationship, and I am trying to put the prior experiences behind me so that I can give this man a chance. My last partner left me 4 months ago and it took him that long to realize how much he hurt me. He contacted me Saturday to talk about our last relationship, and possibly get back together again.

I gave him two years, but the stress was just to much for us. He started seeing someone else before ending our relationship. I picked myself up and started over again. Each time I start a new relationship I hope it will stand the test of time. Most of my friends don't understand the nature of my condition and think I am being a drama queen and impatient with my partners.

I think it takes a very special, loving, compassionate man to accept me as I am. Right now I am just trying to stay focused on my positive qualities, and stop seeing myself as a burden.

I have to educate my new boyfriend. Hopefully, he will be cautious. You are right some people can't or won't understand or take me serious.

I try to tell them that it is like a severe case of indigestion that can be non stop for days at a time. They can understand that an antiacid will not fix this. I use to hide my symptoms, but now I let everyone see how I am suffering including my dates.

I definitely do not want to spend the rest of my life single. My mood swings are leading to negative thinking right now. The crying jags are relentless.

I left my last boyfriend because I became extremely ill after kissing him a few times. My bacterial count reached 19 out or 21. Took me 1 month to bring it to 3 out of 21. Last count was 1 out of 21.

He claimed he was clean, but even a trace amount will cause a flare in my body. I have multiple allergies. My reaction to each allergen is different, but I can tell them apart. Gluten intolerance is just recent. Alcohol intolerance started in the 80s.

I can tolerate Smirrnoff Vodka and Crown Royal, Okanagan Premium Dry Classic Apple Cider, any tequila, gin, and rum. The local liquor store just started a gluten free section.

I talk to all the local business owners about my gluten intolerance and other sensitivities, for my benefit as well as that of the many who have yet to be diagnosed. They are making efforts to provide me with gluten free items. I was glutened yesterday although the owner, a dear friend, of my favorite restaurant was careful. I'm still recuperating.

I prefer to make items from scratch. I'm going to be 51 years soon, and less resilient, so I can't afford to be glutened, both physically and emotionally. Alas, brain fog, I hope I am making sense.

I kissed my BF after he had whiskey...I suffered the consequences. What a way to find out I couldn't tolerate his brand of whiskey.

I stick to items labeled gluten free.

I think for alcohol to be safe it has to be distilled a few times.

I haven't had a flu shot in over a decade, and I don't plan to start.

H1N1 was a nasty flu. I felt like someone just put my whole body in a vise and twisted it. I swear portions of my lungs were expelled with each cough.

The experience was like being glutened to the nth degree. Hey....what doesn't kill you makes you stronger...lol!

I have multiple allergies, so trying to live a healthy lifestyle is a challenge.

Just trace amounts can affect my body.

Even a sneeze. Sometimes, drugstores at certain times of year, where colognes are tested. Even, after I shake the hand of someone who has handled gluten or allergens will trigger a reaction.

I'm experiencing mood swings right now. Aaarrrgh!

The severity of the reactions decreased over time because my digestive tract is healing. My immune system is stronger.

After doing a gluten free diet for approx. 3 mo. this year, I returned to gluten diet for a short period of time. In just a few short weeks my muscles and joints were throbbing in pain. Also, I experienced muscle spasms comparable to a charly horse.

I quickly returned to gluten free diet, and it took a few weeks before my body returned to normal. During that time I experienced the occasional muscle spasm before it settle down to twitches and then just random twitches.

When ever I am accidentally gluttened, I feel it immediately under my left eye which starts to twitch then comes the heart palpitations, anxiety, and ADHD symptoms. That's from trace amounts of gluten. What follows is gas and indigestion.

Thank you for addressing the issue of kissing SO.

I was glutened several times over the past two years. They didn't understand the risk to my health.

I'm dating after being officially diagnosed as gluten intolerant.

Now, that I have overcome the fear of being glutened by kissing, I am dreading the conversations about the risks of kissing someone who has digested gluten.