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

Hi, I'm New

Armae

By Armae
in Coping with Celiac Disease

Recommended Posts

Armae Newbie
Armae
Posted

Hello everybody, I'm so happy I found this forum!

Although it has been 7 months since my diagnosis, I'm getting disheartened by my lack of improvement. I'm still exhausted, having toliet trouble and the celiac rash, even though I have been stringent with avoiding gluten, except when a cereal that I have changed their packaging to "may contain traces", two months ago, which I have since cut out.

I feel marginally better than I was at diagnosis, but I am struggling getting back on my feet at university and work. I go to work one day a week, recover for a day, then have uni for two days, then spend four days recovering, then it starts all over again and I feel like I can never "catch up".

It's really starting to get me down, I'm sorry to complain but I feel as though I'm never going to get better. I'm due for another biopsy soon but I'm worried that I will not have healed properly.

I was wondering how long on average it took you guys to feel better on a gluten free diet?

I appreciate any advice you can offer! :)

-Armae

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

Celiac.com Sponsor (A8-M):


TES Newbie
TES
Posted
Hello everybody, I'm so happy I found this forum!

Although it has been 7 months since my diagnosis, I'm getting disheartened by my lack of improvement. I'm still exhausted, having toliet trouble and the celiac rash, even though I have been stringent with avoiding gluten, except when a cereal that I have changed their packaging to "may contain traces", two months ago, which I have since cut out.

I feel marginally better than I was at diagnosis, but I am struggling getting back on my feet at university and work. I go to work one day a week, recover for a day, then have uni for two days, then spend four days recovering, then it starts all over again and I feel like I can never "catch up".

It's really starting to get me down, I'm sorry to complain but I feel as though I'm never going to get better. I'm due for another biopsy soon but I'm worried that I will not have healed properly.

I was wondering how long on average it took you guys to feel better on a gluten free diet?

I appreciate any advice you can offer! :)

-Armae[/quote

]I am new at this too, about 7 months. It is different for everybody, but I am really starting to feel great and back to normal. I thought for a while it was just healing, about every three days, then about once a week, I would get sick (skin, gut and other symptoms) I don't think so, now. I was still getting glutened, even though I was being so cautious... that crap is in everything! I recently have gone for 3 weeks without any symptoms, then had some chicken (frozen in broth) that glutened me. I had emailed company and they had assured me that it was safe...it wasn't! So, a lot of things, I had previously eliminated, might not have been the culprits, it probably was the chicken! Back to square one! Are you sure you are gluten free?

TES

mamaw Community Regular
mamaw
Posted

Hi & Welcome

No one heals at the same rate of time. It can take some only a few days to notice a change & others it can take two years... remember you didn't get this way overnight & it takes time to get all the bad stuff out of your body.

Are you drinking plenty of good clean pure water daily? And gluten can be hidden & it is easy to miss the hidden . Do you eat out much? That too can cause problems for many.

Other things you may want to check out are diabetes, thyroid, chronic fatigue, fibromyglia, lupus, ms to name a few things. It is not un-common to develope other auto-immune disorders once you have one. Other things are you may be reacting to nightshade vegetables, corn, soy, sugar, things that have nothing to do with celiac.....If you take vitamins & minerals make sure they are okay as well. I also am a believer in enzymes & probiotics.

If you feel you are not improving as you wish , you could do the elimination diet & you may find your answer..

hth blessings

mamaw

ang1e0251 Contributor
ang1e0251
Posted

What's your diet like? Gluten is very sneaky and can hide in seemingly harmless foods or drinks. Also some spices are not pure. Lots of mine had to go from being cc'd. Your symptoms sound like it could be hidden gluten. Could be something you're eating almost every day.

Armae Newbie
Armae
Posted
  • Author

Thank you for all of your advice, I really appreciate it! :) It's great to talk to people who are in similar situations as me.

Here's some more information, maybe you could see where I need improvement from these?:

* I did the elimination diet, and my dietician diagnosed me as a fructose malabsorber and as lactose intolerant (except for cheese due to only trace amounts of lactose)

* I had skin and blood allergy testing about a year ago, and am allergic to (in order of severity) bananas, avacado, corn, soy, peanuts, (and other nuts) pork, tuna, salmon and have oral allergy syndrom with raw vegetables, which are fine cooked.

* I'm also anemic and take gluten, lactose and corn free supplements twice a day until I review with my doctor every 8 weeks

* I don't eat out anymore. I did for the first month after I got diagnosed but realised its better to know what I'm eating, as even the most well meaning restaurant staff don't understand the severity of "well, it only had trace amounts" :)

* I don't take pro-biotics, but I will try them thats a great idea, do you recommend any particular brands?

* My husband is equally dilligent about gluten, so if he is to have something with gluten in it, it must be seperate. He has his own shelves with his flour, cereals and breads in it. We each have our own toasters, "gluten" utensils like wooden spoons and "gluten free" utensils. We have seperate tubs of margerine, don't kiss unless we've brushed our teeth, and we use gluten free toothpaste.

* My diet is generally as follows:

Breakfast: Gluten & Lactose free pot of yogurt or rice porridge with lactose free milk

Snack: Vege chips (gluten-free made of tapioca) or roasted chick peas

Lunch: Mighty mite on toast (gluten-free version of vegemite, yep I'm an Aussie!)

or rice with steamed vegetables

or rice pasta

Dinner: Jacket potatoes, stirfries, soups, pastas, etc

Treats: gluten free, soy & corn free, lactose free dark chocolate or organic gluten-free potato chips

I'm sorry that is so much info, but perhaps I'm doing something wrong that you guys might pick up?

Thanks again for all your help!

-Armae

mamaw Community Regular
mamaw
Posted

I wish I could tell you more but it seems like you have been tested & tested. I do know some people have problems with tapicoa products & rice...

I don't see much fruit in your diet, oddly enough I get sick when I combine certain foods. Eating one at a time I have no problem but when I add one thing with another I can get sick.

I'm not sure if you could find a practitioner but NAET or Bio-Set can help with some of your allergies. I always reacted to the nightshade family until I had these alternative treatments. You can google both of them , lots of info available on both.....

Do you have any pets? That too can cause issues with the feed or a lick from a furry friend.

Another thing to check on is adrenal fatigue......

I wish I had good news!

blessings

mamaw

ang1e0251 Contributor
ang1e0251
Posted

What jumped out at me about your diet was you eat a lot of dairy. I know you said lactose intolerant but so am I and no way could I eat yogurt or lactose free milk. My daughter can tolerate it but I can't. Lately I had to give up butter too. I hope I don't have to give up cheese, so far so good.

I would suggest you give up the dairy for a couple of weeks and see how you feel. You're experienced in the elimination diet so you know to reintroduce the dairy later and catch your reaction to it. Take some notes on your reactions and what you are eating to help clarify things to you and your dr.

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

I have felt just like you many times. One thing to remember is that sense of hopelessness is glutening symptom. It comes from neurological damage. It took me a long time to get my diet all the way gluten free. It has been a year and a half now, and I still glutened myself last week. Generally, I got it mainly figured out after a year.

BioK is a probiotic brand that helps me. There is some in my fridge right now. I get the dairy kind. The nondairy kind is awful. I eat almost no processed foods. The brand that glutened me is now out. I buy whole grains from exclusive facilities and grind my own flour. I don't eat out. We tried for a year to have a mixed household, with gluten eating family members being very careful. My celiac son and I could not remain healthy until we went to a totally gluten free household. Sensitive celiacs generally agree that for them, a gluten free household is a must. That might have to be your first step.

I hope you feel well soon.

Mrs. Smith Explorer
Mrs. Smith
Posted
I have felt just like you many times. One thing to remember is that sense of hopelessness is glutening symptom. It comes from neurological damage. It took me a long time to get my diet all the way gluten free. It has been a year and a half now, and I still glutened myself last week. Generally, I got it mainly figured out after a year.

BioK is a probiotic brand that helps me. There is some in my fridge right now. I get the dairy kind. The nondairy kind is awful. I eat almost no processed foods. The brand that glutened me is now out. I buy whole grains from exclusive facilities and grind my own flour. I don't eat out. We tried for a year to have a mixed household, with gluten eating family members being very careful. My celiac son and I could not remain healthy until we went to a totally gluten free household. Sensitive celiacs generally agree that for them, a gluten free household is a must. That might have to be your first step.

I hope you feel well soon.

My husband will not go gluten free although he is VERY supportive and I hate to deprive my kids if I dont have to. I already have my own toaster and all stainless cookware its all cleaned in the dishwasher. Any suggestions for me since I dont think I can do the whole household gluten free? I have my own cupboard and drawer in the kitchen and they know not to use my butter/mayo/gluten-free mustard and so on.

dilettantesteph Collaborator
dilettantesteph
Posted

Many celiacs have mixed kitchens. It depends on how sensitive you are to small amounts of gluten. My family didn't want to go gluten free either. That is why we tried the mixed kitchen for a year before giving up on it. At that point they were glad to do it. They didn't like seeing us sick as much as we didn't like being sick. Hopefully you will be able to manage it.

Armae Newbie
Armae
Posted
  • Author

I feel incredibly stupid.

I just found the root of why I'm not improving, and I feel like an idiot for not picking it up sooner.

We go to a discount butchers, so everything is weighed out deli style, not prepackaged.

I took some frozen mince out of its bag about an hour ago, and noticed that the sticker they put on the bag said "may contain traces of gluten." I had never thought to check it, even though I check all other labels religiously.

Great. I have been eating that meat for the past seven months. I can't believe I didn't think of the cross contamination from crumbed meats earlier... I had been so, so careful with everything else.

I suppose I'm glad I found out a possible cause of why I still feel sick... but ohhh I'm so cross!

Thank you for all of your suggestions, I really appreciate it.

I'll get there one day! :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748
    Lostcha
    Newest Member
    Lostcha
    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

    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.