Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

So Frustrated And Angry Today


cornygirl

Recommended Posts

cornygirl Rookie

Hi everyone,

Normally i hate to complain, but i'm bottling up all this frustration and anger and i feel like i should just get it out. So here i am.

I feel like my whole body is shutting down and there's nothing I can do to make it better. After years of stomach problems that I ignored, I've been getting soooo progressively worse since October. I cut out gluten soon after, on the suggsetion of a few people who knew someone with celiac, because I couldn't get in to see my doctor, and when I did she was kinda rude and very unhelpful.

The diet seemed to help right away, but I'd still get sick off and on. I'm not sure if I'm being exposed to gluten (possible, since I end up eating out more than I should), or if there's something else going on.

But since getting travellers' diarrhea in indonesia a few months ago, I've been constantly sick and can't seem to get better. I took antibiotics and now test negative for parasites or bacteria, but am still sick. The diarrhea, cramps, etc are so much worse, but then there's also fatigue, weight loss, muscle pain, joint pain, numbness, dizziness, and just this horrible general feeling of illness.

I'm 26 years old and, before getting sick, had such a full and active life. I feel like being sick defines me now.

I'm so tired all the time -- at the worst point two weeks ago I could barely form a sentence, it took so much effort to think and talk. I feel like I'm wasting away -- physically, mentally, emotionally.

I've been trying to stay positive -- I know being negative and stressed about being sick isn't helping me get better. And I know I have so much to be thankful for -- wonderful people in my life especially -- but I feel so hopeless.

I've done so much to improve my health -- quit smoking, gave up caffeine, gave up all my old favorite gluten-filled foods, avoid processed foods, cut way down on alcohol. I know it's helping, but I'm still so sick, it's frustrating to feel like I'm giving up things for nothing. (I know it's not nothing, it's my long-term health, but day-to-day I sometimes lose sight of that).

I think back to November/December when I thought the worst thing in the world was giving up pizza and beer. Now I would gladly give up anything if it meant getting better. I guess I've learned a lot from being sick, but on days like today I feel like yelling, okay universe, I've learned my lessons, now let me heal.

I don't even know if what I have is celiac -- I finally have an appt with a GI specialist next week but I've been gluten-free for months. I've had so many frustrations with doctors that I feel like I'm left to heal myself. I could deal with anything if I just knew what it was and how to get better.

Whew, okay, thank you for letting me get that out. And, thank you all so much for the advice that I've been reading overt the last months, and providing this space for getting out this negativity. I hate to share it with others.

I guess I'm going to try to be more strict on my diet -- stick to really, really simple foods and stop eating out (I know, seems obvious, but I hardly see my friends, so when I do....) Anyway, thanks again.

Wishing you all good health,

Lisa


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



Celiac.com Sponsor (A8-M):



ryebaby0 Enthusiast

Lisa:

I normally am over on the "children with celiac disease" forum, but I try to lurk here and there since I usually learn something that is good for my son's life. I know how discouraging being sick can be and didn't want you to feel all alone after posting. I think everyone has days where they just can't stand it anymore and need to vent. Good for you for recognizing that need. Better for you that you should eat carefully; dining out is such a problem, Go out with your friends, but maybe decide ahead of time what you are going to eat? drink? Being healthy is the best anti-depressant :)

And never put up with rude or unhelpful doctors. Lay down the law. Read up on celiac disease and know what you need from your doctor to get healthy. Medicine is not about diagnosis, it's about people and their life and you are completely right to want help from your doctors.

My son said once that people would tell him to have a good day, but some days aren't good, and they aren't bad, so he invented the term "going forward days" and that's what we'll hope for, for you

Joanna

YankeeDB Contributor

Cornygirl, your situation sounds difficult and complex and I'm sorry you're having such a hard time. It may be you have multiple conditions and celiac disease may be (probably is) one of them. One thought that came to mind when I read your post is additional food allergies. Perhaps take 2 weeks and resolve not to go out at all but stay in and eat the mildest of foods and see how you do. Especially avoid the common allergy foods: dairy, nuts, eggs, yeast, and soy. You might want to look at the paleo-lithic diet--it's rather intimidating in its restrictions, I think, but it could be tried to just 2 weeks to see if it's worth it.

I know about the going out dilemma. So much of our socializing revolves around eating. I'm still working this one out for myself. One thought I have is to eat before going out and then just having something "token"--a drink, a salad with oil & vinegar perhaps. Do you use a dining card that explains celiac disease? I've found this helpful in restaurants, though it's no guarantee of course.

If you can afford it, you may want to check out the tests offered by enterolab. Figure if you're not going to eat out the money you save could go for the tests, maybe? It's true if you are gluten-free that a blood test may yield a false negative so the enterolab stool test may be more accurate for you.

I know about fighting with doctors to get help. It's especially difficult when you have no energy for the battle! My own doctor was ready to send me to a shrink. Actually, depression IS a component of my condition over and above my celiac disease. The fatigue I had is diminishing the longer I remain gluten-free.

Anyway, hang in there. You CAN find your way to excellent health! :)

travelthomas Apprentice

Lisa,

The really good thing about this point in time is, there is not that much unhealthy processed gluten free food to be had. Soon people will go from wheat breads and cookies to gluten free breads and cookies, without missing a step. They will remain fat, undernourished, and unhealthy, while thinking they are doing something good for their bodies.

The blessing of the moment is you can develop a healthy diet for the rest of your life.

cornygirl Rookie

All,

Thank you so much for your warm and thoughtful replies.

I'm taking your advice and sticking to rice and chicken, maybe some other very mild foods for a while, then slowing introducing things one at a time to check how I do.

At this point, the diarrhea and stuff is minor compared to the scarier things I've been experiencing (it's so frightening to wake up and realize you've lost sensation in your body -- and i'm in my 20s!). But I know they could be related, so I guess I should start with the food.

I do know how lucky I am, and I really believe that if I ever figure out what's wrong with me and get better, I'll live a much healthier and content life in the long run. Or maybe if my body just has more time to heal on its own. The best thing for me I think is that things I used to worry about seem so trivial now -- and that really is a blessing. There is so much in the world to be joyful about, and so little that is truly worth worrying over.

Thanks again all for your help.

Off to have a little rice picnic in the park (before it rains!)

Have a beautiful weekend.

Lisa

angel-jd1 Community Regular

Lisa-

You have an awesome attitude twards all this. That is a great strength for you to have during this time. Don't loose sight of the goal (being healthy) Healing just takes time. The people here are a great resource so use them! Take babysteps to get to your goal.

-Jessica :rolleyes:

YankeeDB Contributor

Lisa, Have you had your B12 level checked? I've read that that can be related to neurological symptoms such as those you have described. The malabsorption of celiac disease can result in B12 problems. Just a thought.


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



Celiac.com Sponsor (A8-M):



cornygirl Rookie

Hey everyone,

Thanks again for the great advice. You're all wonderful.

I was wondering, how do you usually add foods back in to test? How many times should I eat the food -- is once enough, or should I have a little for a few days in a row? How long should I wait between different foods? A couple of days?

I just started taking B12 sublingual tablets -- thanks for that suggestion. I'm also making another appt with my regular doc, in addition to the GI specialist this week, so I will ask her about testing me for vitamin deficiencies.

Peace,

Lisa

YankeeDB Contributor

I'm no expert but I think have a food one time and then wait a day is enough to see it's really going to zap you. If it doesn't hurt you, then it's probably safe.

Also, I wonder if you have had your pancreas and liver checked in your workups?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,409
    • Most Online (within 30 mins)
      7,748

    Ripken
    Newest Member
    Ripken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...