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

Struggling - The Hardest Part

webbooo

By webbooo
in Coping with Celiac Disease

Recommended Posts

webbooo Rookie
webbooo
Posted

Hi all,

 

I was diagnosed with Celiac disease about 8 weeks ago after having some blood test taken.  I have suffered generalized anxiety in the past and feel what I eat has an impact on this.   i have been on a Gluten free diet and generally feeling OK, have tried experimenting with bone broth, fermented vegetables and cakes which I have really been enjoying.  Its also made me realize that for most of my life I've been a sugar addict,  I would always prefer a desert before a main meal and always craved sweet foods.  The last few days and today especially have been horrible, today I even left work early as I'd been feeling weak/light headed and have little energy, my muscles feel weak.  I ate out on the weekend at a Restaurant and although I 'ordered' gluten free feel like I may have eaten something which wasn't.  I'm not sure if I'm lacking calories or have some other deficiency but feeling like this sucks.  It feels like a battle where I'm always checking what goes in my mouth, what I'll eat in the future or what I ate in the past.  Its also hard as not a lot of other people understand.

 

When I was diagnosed with Celiac a part of me thought it was a chance to get my health back on track but I'm now realising that its a life long commitment and it not always going to be easy.  I have a busy job, normal relationship difficulties and 2 beautiful kids under 4 so life has its normal stresses as well.. At the moment I'm just sick of it and want to lie down and sleep, I'm sick of feeling s$#& all the time and feeling tied even when I have sleep for 7 hours.

 

Thanks for reading,  I am curious if anyone else discovered they were deficient in something after been diagnosed and is there a light at the end of the tunnel?

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

Celiac.com Sponsor (A8-M):


Jays911 Contributor
Jays911
Posted

It is a struggle, but one well worth undertaking.  I have been gluten free since the beginning of the year, and feel so much better now.  It takes a while, but you will find foods that are good for you and that you like.  Same with gluten-free restaurants and menus.  Keep the faith.

mamaw Community Regular
mamaw
Posted

hello, yes, yes, yes, to light at the end of the  tunnel!!!!  It  takes the gut  a lot of time  to heal from all the years  of damage & many times the  gut  fights back...For  some  they feel better  in an instant for others  it can take a couple  of  years.... you need to be  patient  with   yourself... Eating    lean, clean  healthy  foods  can be a  big  help  in  allowing the gut  to heal...So  if  possible  stay a way  from  processed  junk food for  at least 3-6  months.. If you are  craving  something  then  have  a small  amount   to  satisfy  your  craving...you may have  gotten gluten  from eating out   or  it  just maybe  the gut  telling  you  to give  it  plain  gluten-free  foods.  The  stomach  can get  over load  from  the foods  you  eat....Your  illness  didn't  happen in a  day  &  your  healing  will not  happen in a  day....

Once  your  gut  heals  &  you  absorb  the food  you  are  eating  you will soon learn  that  all the  sweets  packs  on pounds  .I too was a  sweet  eater  from a very young  age...

You also may want to consider  getting  your  kids  checked as well....

With  celiac  we  do lack  nutrients  such as  B-12 Vit D, Calcium,  magnesium  & more... bone loss,  Many of us  have  developed  other  autoimmune  disorders  like  thyroid issues, osteoporosis  & others....

 

The  great  news  is  this is all manageable & becomes  second  nature once  you get through the healing process. 

 

Some  things to decide  is  will your house  to  all gluten free  or   dual  ?  You will need  to  take  care of  yourself  at home.  Small kids  , big messes.....wheat  crumbs  in toaster  ( get  yourself a  cheap one for  gluten-free  only).... cooking utensils & pots & pans  should  be okay  if  no  scratches or  gouges in them.... no  double  dipping  into  jars  of  things .. A few  crumbs  from  wheat  can cause a reaction.....

 

Make  your self  a gluten-free goodie  bag  for your  car,  work  , this way  if  an unexpected  happens  you  will have  something  to eat & not be  tempted  to eat  a  gluten  food.... After  you are better  & healthy & decide  to  dine out  look  for places  that  offer  a gluten-free  menu. As  you  know  that is not  100%  always  safe  either  but  it  is better  than  cold  turkey...when  we  do Italian  I always  take  a breadstick  or  Italian gluten-free  bread  in my purse....Hamburger place  take  a gluten-free  bun  if  they don't offer....

 

You  will be okay  just  give  the  body time to heal.....

RMJ Mentor
RMJ
Posted

When you were diagnosed did they do any other blood tests? Could you have anemia or a vitamin deficiency?

kerrygirl15 Newbie
kerrygirl15
Posted

Hi,

I was diagnosed a few weeks ago too.I'm finding it ok so far.I'd do anything at all to not be sick all the time so going gluten free isn't too much trouble for me.

I was in hospital for septicemia when they tested me for celiac disease.I had had a blood test when I was 17 for celiac which was positive ,when they did the biopsy that time it was negative for celiac but it turned out I had non hodgkins lymphoma.The bloods this time were positive again and when I was out of icu they did a biopsy which was positive for celiac disease.I was severely anemic and my platelets were extremely low so I had a number of blood transfusions now I don't know if that was from the sepsis or celiac maybe both.I am also very low in vitamin B12 at the moment and have to get injections every week.My magnesium and potassium is also low at the moment.I am still quite anemic and I have to have iv iron infusions until it's right again.I do feel a lot better than before I am still very tired and stay in bed for pretty much the whole day but I am getting there.I know it'll take time to feel healthy again but I am an extremely patient person so I think that's a good thing for me.

Maybe you are anemic or have vitamin B12 deficiency?

Try to be patient you will get better well I hope anyway!I always say I will get better I think that's what has got me through the last few years!There has to be light at the end of the tunnel!

Hope you feel better soon.

StClair Apprentice
StClair
Posted

I was diagnosed at about the same time as you and am in a similar mind space. Between the gluten-free, acid reflux/gastritis and lactose/fructose intolerance diets there's not much left to eat (I don't like red meat or fish, only chicken) and I'm still losing weight. I've had some improvement, I think, with digestion, migraines and anxiety, so that's something good, but I continue to be paranoid about accidentally ingesting gluten. I'll get scoped again this summer if the reflux doesn't improve, and that will give me a chance to see how my small intestine is looking. Hang in there. We will make it.

webbooo Rookie
webbooo
Posted
  • Author

Thanks everyone for your responses, I really appreciated reading your replies.  I have been to the doctor this morning and given a round of bloods and also provided a stool sample so I'll go back in a few days to see what transpires.

 

One thing I discovered last night was the Multi Vitamin I've been taking 'herbs of gold' contains Gluten.  I couldn't believe it but I think it was me just getting used to the lifestyle that I neglected to really look into it.  Nothing was mentioned on the label to say 'Gluten free' so I only discovered it once I phoned them up and asked.  Hopefully the other test come back OK.

 

Does anyone use or can recommend a good Gluten Free Multi Vitamin? and does anyone eat processed Gluten Free foods (breads and biscuits) from the shop?  I see a lot of do and dont's about all the Gluten Free foods (high carbs and sugar) that are available today but sometimes when I have a craving a couple biscuits really helps.

 

cheers

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

If  you google  gluten-free multi vit & min  many will come  up...

cyclinglady Grand Master
cyclinglady
Posted

Indulge and have a gluten-free biscuit! Things will get better!

Celiacandme Apprentice
Celiacandme
Posted

I'm sorry that your vitamin had gluten in it. So glad you caught that now!

 

Keep us posted on the results from your blood work. Glad you went in for testing. You may very well be deficient in something! Vit D, iron, etc...

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.