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

10 Months Post Diagnosis, Struggling With New Symptoms

rain

Recommended Posts

rain Contributor
rain
Posted

Hi, I feel crazy - 10 months and I'm still struggling with symptoms that I don't understand.

Early in the diagnosis the foggy headedness, the constant eating and never feeling satisfied, the gluten ataxia all subsided. Emotionally I was feeling more even, and anxiety was clearly fading. I feel so much better and am so grateful that it's been real easy to stay away from gluten. It's made me utterly crazy to figure out what to eat but I'm managing.

What is making me crazy is this whole world of new symptoms. Are they celiac related or not? In the last few years I've had chest tightness (I'm asthmatic but this is different from what I've had before.) It continues and doesn't improve. Unbelievably bad exzema since going off gluten. A persistant rash that erupts on the sides of my chin. Started with an outbreak due to sun exposure and continues on. It's driving me batty. Plus it hurts. Body stiffness and a really weird tiredness. Not deep fatigue, that is gone but a sort of disconnectedness. Sinus congestion constantly.

I've just taken out oats.

I don't eat dairy.

I've taken out nightshades.

I'm cutting fruit back to one piece a day and will likely cut that out.

I take a multi-vitamin, lysine, extra C. I've started on ayurvedic herbs.

I use vanicream lotion which burns but I'm allergic now to all other lotions and oils except coconut oil and vaseline.

I'm soooo edgy

Any thoughts? I just discovered the center for celiac research in Baltimore. I'm going to try to see if they can help me.

Thanks!

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

Celiac.com Sponsor (A8-M):


Katie B Apprentice
Katie B
Posted

In terms of food intolerances (and it's probably hard to tell if that's what's the cause at this point) you might want to contact the dieticians in Australia (Shepherd Works or Diet Solutions) to do an elimination diet. It's very difficult to do this on your own (although possible). They advocate the low-FODMAP diet. I wouldn't automatically attribute all of these symptoms to a food intolerance/allergy but it's a variable you can control so it's worth doing.

rain Contributor
rain
Posted
  • Author

Thank you! I have an appt now (I can't believe it, finally) at the Center for Celiac Research so hopefully now I'll get some real help rather than flying solo. Apparently they work as a team of docs rather just a gastro or nutritionist..

I was up til 1:00 last night scratching and feeling so unbelievably uncomfortable and of course I continue to feel worn out today. But I'm sure it will get better. It has too!!

Thanks for listening.

GFinDC Veteran
GFinDC
Posted

Thank you! I have an appt now (I can't believe it, finally) at the Center for Celiac Research so hopefully now I'll get some real help rather than flying solo. Apparently they work as a team of docs rather just a gastro or nutritionist..

I was up til 1:00 last night scratching and feeling so unbelievably uncomfortable and of course I continue to feel worn out today. But I'm sure it will get better. It has too!!

Thanks for listening.

Have you tried eliminating soy? Soy is a problem for some of us.

  • 2 weeks later...
rain Contributor
rain
Posted
  • Author

Have you tried eliminating soy? Soy is a problem for some of us.

Ok, so I've now taken out soy. (I need to figure out how to do it since I use soy milk and butter so regularly.)

Today I'm wearing a turtle neck because my neck and chest are red and raw with the rash. I'm also in a fair amount of low grade pain. I can't wait for the doc appt. I really hope this is all still celiac and not some other complication.

Thanks for the nudge on soy.

shopgirl Contributor
shopgirl
Posted

Ok, so I've now taken out soy. (I need to figure out how to do it since I use soy milk and butter so regularly.)

Silk Pure Almond milk is delicious. I'm a big fan of the Dark Chocolate and Vanilla versions. Gluten, dairy, and soy free.

And Earth Balance makes a great dairy-free, soy-free "butter."

rain Contributor
rain
Posted
  • Author

Silk Pure Almond milk is delicious. I'm a big fan of the Dark Chocolate and Vanilla versions. Gluten, dairy, and soy free.

And Earth Balance makes a great dairy-free, soy-free "butter."

Thanks for the tip on Earth Balance! I've also taken out nuts so I can't drink Almond Milk, but I'm learning to like (and I mean learning!) Rice Milk.

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

Celiac.com Sponsor (A8-M):


shopgirl Contributor
shopgirl
Posted

Thanks for the tip on Earth Balance! I've also taken out nuts so I can't drink Almond Milk, but I'm learning to like (and I mean learning!) Rice Milk.

It's not Rice Dream rice milk, right? That has hidden gluten in it.

rain Contributor
rain
Posted
  • Author

Yes it is!! oh no...

Which one should I buy?

Thanks so much for telling me.

shopgirl Contributor
shopgirl
Posted

I don't have any experience with rice milk so someone else will have to charm in but the hidden barely in Rice Dream

kate1 Newbie
kate1
Posted

I found out by accident that rice dream had possible gluten from barley when I couldnt get hold of any for over a week and bought a different one.

When it was in stock again I bought some and was not well all day and was confused, everything I had eaten was Gluten free....so I googled Rice dream and looked on here too!!!!! I have not bought it since......Try look for another make. :)

GFinDC Veteran
GFinDC
Posted

Hemp milk is another option, one brand is called Tempt. There are gluten free rice milks also, just the Dream ones are bad as far as I know.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748
    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.