Healing And Miserable

[JRS]

I have been gluten free for approximately 3 months and my faith is reaaally faltering right now... This past weekend my husband and I went away to celebrate our original dating anniversary. Anyway, the worse of my symptoms started after I got married (and stopped eating a mostly meat and veggies kind of diet) so my husband has really been through a lot... we feared for my life for a while there... When I began my gluten-free life it was a blessing and a heart break as we both greatly enjoy adventures in food...

Well this past weekend we went to Marietta to enjoy some history, stay in a hotel, eat, drink, and be merry! Well I got horribly horribly sick while walking around downtown and we ended up having to literally run for the car to rush me away... It is now 2 full days later and I've never been this sick. I hate to complain to my husband (who unfortunately has a limited capacity for understanding as he has been healthy as an ox most of his life) who hears it ALLLLL the time..... I guess I'm just feeling alone. I know my body has been healing and improving, but each little slip up (no matter how big or small) gets 100% worse than the last... This time not only did I have to run to the car with my newly-wed husband, but I had to camp out in a public restroom for nearly 1 hour crying to myself as I wondered what the heck I did to deserve this, I was in pain and nauseous all weekend and now... my entire body seems to be swollen and riddled with pain... It hurts to sit, move, talk, wear clothes, anything... It is somewhat better than yesterday as I've only had one rush to the bathroom so far this morning, but the pain and swelling are brand new symptoms and they makes me feel very weird/alienated/alone/desperate/weak...

Just someone please tell me this is normal and I'm not alone and it will get better...

[hannahp57]

you are NOT alone! Soo many people hear have a similar story..

I was recently glutened because of my own forgetfulness to label. my symptoms include all the yucky stomach ones which meant i had to rush myself home from eating dinner at hubby's fire station. i made it in time just barely and then was very sick. for me it also means extreme fatigue and slight depression for hours. i cry and cry every time i am glutened. the soreness the next few days also gets me tired but i haven't ever felt swollen, though many people do get slightly bloated...? maybe that is what is going on.

i can also say that the longer you stay away from gluten and allow your body to heal, the more sensitive you become to gluten and thus your reactions may seem to get worse.

i hope you begin feeling better soon! always come here to vent. we understand and you wont hear any "its all in your head" from here

[sylviaann]

I have been gluten free for approximately 3 months and my faith is reaaally faltering right now... This past weekend my husband and I went away to celebrate our original dating anniversary. Anyway, the worse of my symptoms started after I got married (and stopped eating a mostly meat and veggies kind of diet) so my husband has really been through a lot... we feared for my life for a while there... When I began my gluten-free life it was a blessing and a heart break as we both greatly enjoy adventures in food...

Well this past weekend we went to Marietta to enjoy some history, stay in a hotel, eat, drink, and be merry! Well I got horribly horribly sick while walking around downtown and we ended up having to literally run for the car to rush me away... It is now 2 full days later and I've never been this sick. I hate to complain to my husband (who unfortunately has a limited capacity for understanding as he has been healthy as an ox most of his life) who hears it ALLLLL the time..... I guess I'm just feeling alone. I know my body has been healing and improving, but each little slip up (no matter how big or small) gets 100% worse than the last... This time not only did I have to run to the car with my newly-wed husband, but I had to camp out in a public restroom for nearly 1 hour crying to myself as I wondered what the heck I did to deserve this, I was in pain and nauseous all weekend and now... my entire body seems to be swollen and riddled with pain... It hurts to sit, move, talk, wear clothes, anything... It is somewhat better than yesterday as I've only had one rush to the bathroom so far this morning, but the pain and swelling are brand new symptoms and they makes me feel very weird/alienated/alone/desperate/weak...

Just someone please tell me this is normal and I'm not alone and it will get better...

I am so sorry you are going through a difficult time and understand how you feel. I fall into a "grey area" on the gluten spectrum and see a wonderful Celiac Specialist in Atlanta. Have you already been formally diagnosed by a Celiac Specialist or did you start a gluten-free diet based on your symptoms?

Have you had an opportunity to consult with a dietician (who specializes in Celiac Disease and gluten sensitivity) for nutritional assessment? You need a comprehensive assessment of your vitamin levels so you can determine what supplementation is essential. I have been on a gluten-free diet since last Oct. but realized that there are many hidden sources of gluten several months later (including some "gluten-free processed products and gluten-free flours." I am still learning something new every day. It sounds like you may be extremely sensitive to gluten so it is possible that only a trace amount can make you very ill. Have you eliminated all gluten from your cosmetics (including lotion, soap, shampoo, lipstick)? Many spices are cross contaminated with trace amounts of Gluten. You may want to grow your own..you can purchase fresh spices (in small pots) at home depot. I have suffered the same issues as you with regards to my spouse having a difficult time adjusting and accepting this condition. We love to eat out but I had to stop.

I would suggest you start over, eating only whole foods (no processed "gluten-free products) for several weeks. Start keeping a daily food, cosmetic, and pharmaceutical diary..and slowly add one new item every week to see what makes you react. Stop all dairy products and drink Pacific brand vanilla rice milk. Croos contamination (products manufactured in a shared facility) is a major issue that many product manufacturers will not share with you when you call to check on products. You have to pose the right questions to get the true answers.

It is a journey and will take time to heal. You have come to the right place for support.

I hope you feel better soon

Sylviaann

[JRS]

you are NOT alone! Soo many people hear have a similar story..

I was recently glutened because of my own forgetfulness to label. my symptoms include all the yucky stomach ones which meant i had to rush myself home from eating dinner at hubby's fire station. i made it in time just barely and then was very sick. for me it also means extreme fatigue and slight depression for hours. i cry and cry every time i am glutened. the soreness the next few days also gets me tired but i haven't ever felt swollen, though many people do get slightly bloated...? maybe that is what is going on.

i can also say that the longer you stay away from gluten and allow your body to heal, the more sensitive you become to gluten and thus your reactions may seem to get worse.

i hope you begin feeling better soon! always come here to vent. we understand and you wont hear any "its all in your head" from here

Oh Hannah thank you for your reply... It was exactly what I needed to hear. The slightly amusing part to all of this is I noticed your reply during a meeting at work, my job: ambulance and fire billing!!! I have noticed the bloated issue from time to time and am dealing with that... but no I am actually slightly puffy all over... abdomen, chest, extremities, etc. No other scary symptoms (no SOB or difficulty ambulating or anything) I'm just sore and puffy. I guess maybe some of this has happened before as my primary doctor first tried to tell me I had fibromyalgia...

I never expected to become MORE sensitive! I thought it would perhaps get less severe after a length of time... And the whole "its in your head" thing DRIVES ME CRAZY!!! My dear dear co-workers are the worst. We have frequent meals and snacks brought in from the "outside" and quite often I hear "Can't you just remove the lunch meat from the pre-made sandwich?" "Can't you just remve the croutons from the salad?" "Can't you just have pasta sometimes and not all the time???" It literally makes me crazy. Like truly feeling unhinged! I understand that you can't really sympathize until you've studied, learned, or experienced, but can't they just STOP trying to "help"????? I finally explained the risks associated with "sometimes" gluten free.. I didn't go into any horrily unpleasant details but I did explain cancer risks and long-term health and that has helped some...

[JRS]

Sylvia thank you for all the information... Unfortunately I don't have time right now to go into too many details about my history, but I can tell you this... I had a wide variety of symptoms, was sick and being tested for various illnesses for over a year. I had heard mention of Celiac from pretty much every doctor that I came into contact with, but my blood tests came back negative. My gastro doctor and his NP had discussed doing the small intestine biopsy, but they had done sooooo many procedures and biopsies and tests that I melted under pressure and fled! I did a lot of my own research and after having heard Celiac mentioned so many times (and also having heard other family members have Celiac symptoms but test negative in blood work) I just went on with life as if I have Celiac.

Now that being said I did go back to whole foods for a few weeks, eliminated it in my meds and makeups, no toasters or suspect pots/pans/dishes etc... Stopped eating out and all that. Now! I did notice that once or twice I have accidently used lotion on my feet that contains wheat. I have since stopped this, but my question is: why? Is gluten transdermally absorbed? Or is putting it on your body simply put you at risk for absorbing it? I thought Celiac is an internal auto-immune response? My primary doctor has been assisting me with my process... he did run multiple blood work ups (as did my gastro doctor) and the only vitamin I was lacking was B12. I get one shot every three weeks and am hopeful that once I heal enough I may no longer need the shot...

As far as dieticians and celiac specialists:

I live in a teeny tiny town in Ohio, which is surrounded by other teeny tiny towns.... We just recently got stoplights so any understanding of Celiac will definitely have to come from the internet. My primary doctor is very current and modern on all of his medical reading, but as far as specialist goes he's all I've got. Unfortunately I have to drive 30 minutes just to get to anyone who knows what gluten is, let alone gluten-free products and living.... I guess you'll have to guide me!!!

I did start a journal, but I started to feel so good for weeks and weeks so I just stopped

[ranger]

So sorry to hear hear about your bad night out. The bathroom is a bad place to celibrate! I have found that even a minute amount of gluten will make me sick, and that seems to be getting worse. I live in Canton Oh. Are you anywhere near hear? Let me know if I can be of any help.

[Sassy-1]

I can only ditto what Hannah said!! The more I behave the worse I get when have gluten. Insane isn't it?

I have become hyper aware of how my body reacts to anything these days. Even certain gluten-free products make me horribly sick.

Unfortunately, we are all unique in this gluten mess and have to find our way through trial and error. Be sure to show your husband these posts so he'll realize you're not crazy.

[JRS]

Yes Ranger I live about 20-30 minutes from Canton. At first I would easily get sick from even gluten-free products with CC warnings on the labels, but it had seemed that after a few months to heal that I was able to be less careful. I guess that was a hoax! The new symptoms developing with this reaction are really very alarming to me and I hope it is not a trend! My original symptoms are bad enough!

I guess from an auto-immune point of view the hyper-sensitivity makes sense during a gluten-free lifestyle, but it certainly isn't fair... May I ask, what gluten free products make you sick? Just so i can have an idea.. My poor husband believes me. Vehemently so actually. He's more easily upset by people who step in "to help me find foods I can eat" than I am, but unfortunately he's not so great with empathy in this aspect of my life.

[GlutenGuy36]

Hi Jocelyn,

I understand totally what you are going through. It is a different experience for everyone. I unfortunately, still do not feel anywhere like I use to even after being gluten free for a year now. I am experiencing some of the same symptoms as you are such as: Random body pains, hurts when I sit, lower back pain, ringing in my ears and general lethargy.

I guess it affects all of us different. I was disheartened by those who would post on here and say how much better they were feeling in a short amount of time but, I have also read that it can take others a lot longer to start feeling good.

I have looked into other food allergies and am currently not eating dairy, soy and of course all things gluten. I may have to try not eating corn as well but if I do that what will be left to eat? LOL.

I hope you feel better soon. You have come to the right place for your concerns. The people on here have been very helpful.

_Ted_

[GFinDC]

Hi Jocelyn,

My ex little town in Ohio had a stop light and they took it out. Now all we have is stop signs and memories.

Sylviann has some good advice for you. One thing I learned is to be selective about adding things to my diet. I tend to try new things one or 2 at a time.

You mentioned swelling as a symptom? If you do a search on allergic reactions swelling you'll probably get some hits on it. From what I remember, swelling feet and ankles etc can be an allergic reaction. I had that for along time, many years in fact. Some of us have both celiac and a wheat allergy. Not saying you do, but could be a possibility.

Since you are self diagnosing, have you considered doing a challenge? You could go on a very clean diet for a few weeks and then do a challenge with barley. And then if you react to barley, wait a bit and try doing a challenge with rye. Assuming you already know you react to wheat, if you react to both rye and barley that would be all 3 grains that celiacs have problems with. This is not any kind of official test method, but it seems like it makes sense.

You may also find yourself having reactions to other foods as well. I got rid of carrots, coffee and tea in my diet recently.

Another thing to be aware of is thyroid problems. Hashimoto's thyroiditis sometimes pops up in celics also. It has plenty of symptoms itself that can make you feel run down etc.

There are several threads around on vitamins that may help you.

Welcome to the board!

[txplowgirl]

Hi Jocelyn,

I have been gluten free a few months. I was wondering about your statement about wearing clothes hurt. That is 1 symptom of fibromyalgia which I have been told is also an auto immune disease. My dr told me that when I get glutened it is 3 to three times worse because it causes a fibro flare as well. Double whammy if you will. Which causes the swelling. When it happens all I can do is take my meds and go to bed. I hope you get to feeling better. Vicky

[JRS]

Thank you all so much for your support and information... Two things I want to touch on before I forget! I do have some autoimmune thyroid condition that was found about 6 months ago. My doctor has not labeled it, but we're treating it and so far its been very effective. My doctor also told me I have "fibromyalgia" but I don't believe him. I am not typically lacking in energy or enthusiasm or happiness. I only hurt when he poked me in those "fibro areas" or whatever those spots are called. I apparently do have some of the symptoms, but only when glutened?

As far as my diet goes I did eliminate all wheat, barley, rye, oats, rice, malt, etc from my diet. Well, at least I try to, obviously I'm not 100% careful as I did get sick this weekend... I did start with a basic clean diet and slowly added in things. I have not yet added in rice and "clean oats" but I will once I get up some courage. I've experienced milk problems before so I know allll about that but as far as soy or any vegetables I really don't know much of anything! I guess I should start considering those things as well...

Again, I truly appreciate the support! It makes it all the more easy to be sitting here miserable.

[ang1e0251]

Do you know what you reacted to that weekend?

[Takala]

Romantic weekend, eh ?

Don't hate on me for saying this, I'm only the messenger, but .... what did he eat before you got sick ?

Yeah, I bet a lot of you never thought of that before.

[ranger]

Romantic weekend, eh ?

Don't hate on me for saying this, I'm only the messenger, but .... what did he eat before you got sick ?

Yeah, I bet a lot of you never thought of that before.

Interesting thaught!

Joclyn,

Are you familiar with Raison Rack in Canton? They have a good selection of gluten-free foods, and a support group that meets the second Sat of the month at 10:00 am. What did you eat that night? I got glutened last week because I was eating chips and dip that I read the ingrediants and was safe but I watched my dgs dip into a bag of crummy cookies and then reach into the same bag of chips, I knew I was cooked. I was sick for 3 days. I should have taken my stuff first and I knew that - just wasn't thinking. I don't have thyroid or febro issues and it sounds like you have a triple cross to bear. Maybe if you get a better handle on those, the gluten-free issues will be easier to deal with. Hope you feel better.

Susan

[JRS]

Ugh... I never thought of THAT! Well, we're always careful not to share drinks when he's eating something I can't... but anything else... oh my gosh. So, now, time to get nitty gritty... Do I have to worry about anything that does not pass into my mouth? I've read the much heated debates regarding various bodily fluids and whether or not they contain gluten, but my question is, in the off chance it does contain gluten sometimes can I get sick without anything passing into my mouth??? Wow what an awful question to have to ask...

I do remember when I got sick this past weekend that I was frustrated because it usually takes me 30-45 minutes to get sick after eating and it had been at least 1h 15m since I had eaten. However, I had started a new vitamin a few days prior that had been slightly upsetting my stomach and I just assumed it had taken two-three days to really throw me into a horrible gluten attack. But I distinctly remember my husband eating breaded chicken just before we left to walk around downtown... it had to have been that! Oh my gosh I didn't even think about it... I'm going to have to talk to him... so if he eats something with gluten can he just rinse his mouth out and he's kissable safe again???

[JRS]

Yes Ranger I LOVE Raisin Rack! I've never been to any of the meetings... but that store has been a God-send! Most of the large chain grocery stores have started carrying small sections of gluten free products as well, which is nice...

[ang1e0251]

You will probably have trouble unless he brushes well and rinses well before kissing. If his teeth are tight and trap food, he should floss too. Sorry, but we have to consider everything.