Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

First Week Going Gluten Free And Very Emotional!


Jallen

Recommended Posts

Jallen Newbie

Hello everyone!

I have decided to go gluten free despite my GI doc saying I had IBS (too many other weird symptoms to accept that!)

I went gluten free last week (with a few slip ups from being a beginner) and so far I feel a bit better. I work the night shift and usually get really back stomach pains and feel 9months prego! Now I just gett a few gas pains and no prego belly so far!

I've noticed that I can cry at the most ridiculous things this past week! I also get very very happy as well (and a little more irritated :P ). Has this happened to anyone else?

I am struggling with the fact that I don't have a diffinitive diagnosis. I know this is a pretty hot topic but it's really hard to start out since I don't know if I really do have celiac disease. I guess my answer will come when I try introducing gluten back in to see what happens. I am just getting so confused reading labels! I thought I read that vegetable oil is bad but then sometimes I see things that have v-oil and this forum has said that it's gluten-free?? I know it will get easier to read labels but I am just afraid that if I'm not careful enough I may not eliminate gluten completely to really tell if I have celiac disease?

Also, I am definitely struggling with the social aspect. I am sure it will get easier but I feel like people think I am a hypochondriac since I am self diagnosing. I have definitely gotten comments from people. Especially when they ask why I am not drinking beer or eating pizza ect (two of my favs). It's hard to explain to someone (especially when they are not super close to you) why I am no longer eating or drinking the things I love when I don't have a definite diagnosis. I have already gotten a little better about preparing beforehand. I am going away with friends tomorrow for three days and have bought some snacks and drinks that I can eat! I admit I had/have somewhat of a food obsession and it's going to be VERY hard to refuse some of the things I love.

Sorry this is so long! Just trying to sort through everything!

Thanks so much for reading and appreciate any advice I can get! :D


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



maile Newbie

Hi there,

no it's not unusual to be emotional. what you eat (or don't eat) can very much affect how you feel and how you react to things. If you've just been gluten free for a few days or so then you are likely in a "detox" phase while your body is learning it doesn't have to react every time you eat something.

GFinDC Veteran

You can make things easier on yourself by sticking with whole foods to start out. Frozen foods with 1 or 2 ingredients on the label are simple, like peas, water, or beans, salt. Short lists of ingredients are much faster to read! Eating like this requires you do some actual cooking, so it can take a bit of time to learn that if you aren't in the habit. Starting out on the diet was quite an adjustment for me. You can probably drink hard cider while your friends are drinking beer. Some places may have gluten-free beer like Redbridge also. Z-pizza and Uno's have gluten-free pizza.

zero Newbie
I am struggling with the fact that I don't have a diffinitive diagnosis. I know this is a pretty hot topic but it's really hard to start out since I don't know if I really do have celiac disease. I guess my answer will come when I try introducing gluten back in to see what happens. I am just getting so confused reading labels! I thought I read that vegetable oil is bad but then sometimes I see things that have v-oil and this forum has said that it's gluten-free?? I know it will get easier to read labels but I am just afraid that if I'm not careful enough I may not eliminate gluten completely to really tell if I have celiac disease?

Also, I am definitely struggling with the social aspect. I am sure it will get easier but I feel like people think I am a hypochondriac since I am self diagnosing. I have definitely gotten comments from people. Especially when they ask why I am not drinking beer or eating pizza ect (two of my favs). It's hard to explain to someone (especially when they are not super close to you) why I am no longer eating or drinking the things I love when I don't have a definite diagnosis. I have already gotten a little better about preparing beforehand. I am going away with friends tomorrow for three days and have bought some snacks and drinks that I can eat! I admit I had/have somewhat of a food obsession and it's going to be VERY hard to refuse some of the things I love.

Sorry this is so long! Just trying to sort through everything!

Thanks so much for reading and appreciate any advice I can get! :D

You've seen doctors, they haven't helped and you still don't feel well. You're taking an active role in trying to improve your health. No more explanation is really required.

The hardest part for me at the beginning was breaking out of the habit of what I used to eat and establishing a new habit of what I could eat. And mistakes were made (why does Mi-Del make ginger snaps with gluten??). But with time and knowledge you will become more discerning of what to look out for. After several months, I got somewhat disgruntled by the diet but I had the celiac label so I knew I couldn't go back. If you come to the same point you will have a bigger challenge but I think you would be wise to work through it. Even with the celiac diagnosis, one of the more satisfying mistakes for me was when I had a reaction which I later traced to soy milk with wheat. Basically it was a blind test so it gave me confidence that this thing was real. Good luck.

mommida Enthusiast

In certain individuals, gluten and casein can have an opiate affect on the brain. You are going through withdrawal.

Doctors admit that "IBS" symptoms can improve on a gluten free diet.

It might be a good thing not to be labeled Celiac. You won't get stuck with a pre-existing condition clause, higher life/health insurance premiums.

Keep a food journal. It will help determine if you have any other food sensitivties.

ang1e0251 Contributor

It's hard to give up your favorite foods and start a whole new lifestyle from one day to the next. It's OK to be emotional about it.

First I would like to say, how would anyone know if you have a dx or not? Isn't your visit with your dr private and privileged? Do not share private info with others who are not your family. It's a need to know basis and they just don't need to know. For those kind of people and restaurants, I just say I have some severe foods allergies and leave it at that. Everyone understands that allergies are serious and most will accept that. And if you are out and there are foods that you're not sure about, you can just say your dr has said you have additional allergies and you and he are still working through those. Till then you can't eat -----.

Also don't settle for food you cannot have, find gluten-free alternatives. There are many restaurants now offering gluten-free alternatives and there is certainly beer you can drink. In our state, UNO Pizza and Godfather Pizza have gluten-free pizza. You'll figure it out as time goes by.

no-more-muffins Apprentice

Yeah, the first couple of weeks are definitely hard. I think that your ups and downs are probably from the gluten withdrawal symptoms. (you can google it if you want to read more.)

I also don't have a definitive diagnosis but after I read about celiac disease I knew that is what was wrong with me. If you don't want to say you have celiac when you don't have a definite diagnosis you can always say that you are sensitive to gluten and that when you eat it you get sick. How can anyone argue with that. You can also say you are having a trial of gluten free to see if your symptoms improve because you feel like your stomach problems are related to food.

I think is great that you are taking your health into your own hands and not taking the "IBS" diagnosis. IBS is the biggest cop-out dianosis and it is just crap.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jallen Newbie

Hey everyone!

Thank you so much for taking the time to reply.

So I just got back from my trip to the cape with some girl friends and I have to say it went great!! I planned ahead and bought G.F. beer and made sure I had snacks (which has always been a huge weakness of mine!) when we ate out I just walked away from the table and asked the waitress what she recommended and they were very accommodating and the dish I got was delicious! The funniest part is after dinner we went out for drinks and all of the other girls were complaining of how bloated they felt and my stomach, for the first time after having a dinner and drinks, felt perfect!!! :P It also helped that my friends are pretty supportive and make me feel very comfortable about it! Anyway, just thought I'd share that I had a good experience!

I have now been eating gluten free for almost two weeks and I am really starting to feel better! The rash that I always thought was acne is clearing up! Now if only my cankers will go away I will feel like a whole new woman!! :o

Thanks again for the advice!

ravenwoodglass Mentor
Hey everyone!

Thank you so much for taking the time to reply.

So I just got back from my trip to the cape with some girl friends and I have to say it went great!! I planned ahead and bought G.F. beer and made sure I had snacks (which has always been a huge weakness of mine!) when we ate out I just walked away from the table and asked the waitress what she recommended and they were very accommodating and the dish I got was delicious! The funniest part is after dinner we went out for drinks and all of the other girls were complaining of how bloated they felt and my stomach, for the first time after having a dinner and drinks, felt perfect!!! :P It also helped that my friends are pretty supportive and make me feel very comfortable about it! Anyway, just thought I'd share that I had a good experience!

I have now been eating gluten free for almost two weeks and I am really starting to feel better! The rash that I always thought was acne is clearing up! Now if only my cankers will go away I will feel like a whole new woman!! :o

Thanks again for the advice!

Sounds like you have gotten through the withdrawl and a trip with freinds successfully. You may still have some ups and downs but it will only get better and easier from here. The cankers will go away and chances are since you have seen your face clearing up your skin will keep improving. I would check out some of the gluten free makeups available if you do wear it. Thanks for posting the update, isn't it great to here when folks start to feel better!

NYCCeliacMom Apprentice
Hey everyone!

Thank you so much for taking the time to reply.

So I just got back from my trip to the cape with some girl friends and I have to say it went great!! I planned ahead and bought G.F. beer and made sure I had snacks (which has always been a huge weakness of mine!) when we ate out I just walked away from the table and asked the waitress what she recommended and they were very accommodating and the dish I got was delicious! The funniest part is after dinner we went out for drinks and all of the other girls were complaining of how bloated they felt and my stomach, for the first time after having a dinner and drinks, felt perfect!!! :P It also helped that my friends are pretty supportive and make me feel very comfortable about it! Anyway, just thought I'd share that I had a good experience!

I have now been eating gluten free for almost two weeks and I am really starting to feel better! The rash that I always thought was acne is clearing up! Now if only my cankers will go away I will feel like a whole new woman!! :o

Thanks again for the advice!

You may find that your canker sores go away completely once you are entirely gluten-free for a while. My celiac was diagnosed 6 months ago. I have had terrible canker sores for about 18 years. I found that taking b complex vitamins, using a toothpaste without sodium laurel sulfate, and using mouthwashes like Biotin and BetaCell (very expensive), helped keep them under control, but going gluten-free meant a vanishing act for the canker sores. Now I know when I have been glutened by some sores showing up. They disappear quickly and never develop into huge, miserable ones.

mamaesq Rookie

My canker sores are mostly gone too. The only time I get them is if I have an accidental gluten ingestion. I accidentally had some on Sunday afternoon, I had diarrhea on Sunday night and a big sore on my gum on Monday morning. It's how I know if I was glutened or if I am sick.

It will get easier. I cried most of October whenever food was involved. I really believe that I went through the stages of grief during the early months of going gluten free. I am mostly at acceptance, but there are occasions that I still get angry or teary at the grocery store.

Jallen Newbie

My canker sores are finally gone! ( after doing some research I think that it was sort of a "detox" phase of my body. I broke out and got those AWFUL canker sores and now they are both gone and my skin looks great!). I really hope that's the last of both of them for a while!

The emotions are getting better, but it's so nice to hear that others feel/felt the same way! I accidently ordered oysters that were fried the other night (I thought they were fresh) and when I got them I started crying on the spot! Then I felt even more like an idiot, lol! They were very nice and gave me a lobster salad instead, it turned out fine :)

LisaaaNoel Explorer

Although I can't say I feel emotional lately, I definitely understand what you're saying as far as trying to go gluten free without an official diagnosis. I was also diagnosed with IBS and haven't found anything to help. So I've put myself on a gluten-free diet to see if I improve. So far I've been on it for 11 days and have seen no improvement. It's hard having motivation to continue with this when it's quite possible that gluten isn't a problem for me. :( In all honesty I hope that my problems are due to gluten, because then at least I could make myself feel better.

Although eating out is hard, I haven't had too much trouble with the food otherwise. I LOVE to cook and for me it's kind of fun figuring out new things to make. (I'm even vegetarian so it makes my diet even more challenging!)

Jallen Newbie

lisaaanoel,

I was wondering if you have started feeling better yet? I have read a lot on here and a lot of people say it took them a while before they started feeling better! I would keep up with it and see how you feel.

I do get what you mean about finding new things, I get excited when I try a new recipes!

Good luck with your trial and I hope you feel better soon!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,556
    • Most Online (within 30 mins)
      7,748

    dflorio
    Newest Member
    dflorio
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.