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 With Recovery :(

MissBonnie

Recommended Posts

MissBonnie Apprentice
MissBonnie
Posted

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..

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

Celiac.com Sponsor (A8-M):


Aussie Farmer Newbie
Aussie Farmer
Posted

Chin up Bonnie if you are an Aussie or even a Kiwi I know that for us "when the going gets tough > the tough get going " I have been right where you are now as a celiac 9mths now and I remember thinking "COME ON ........3 WEEKS NOW,,,, WHEN WILL this EASE UP" !!! but it did, around that time so hopefully anyday now you will improve, bit by bit to the stage when you will be better than ever before .....yeeeeee haaaaaaa B)

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..

Marilyn R Community Regular
Marilyn R
Posted

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..

I'm sorry you're feeling so bad, especially when you should be feeling so much better. What are you eating?

Many of us develop other food intolerances, especially to dairy, soy, corn. The protein is similar in structure to gluten and your autoimmune system keeps attacking. I have to avoid quinoa too.

It may help to see an allergist too. Good luck!

MissBonnie Apprentice
MissBonnie
Posted
  • Author

I'm sorry you're feeling so bad, especially when you should be feeling so much better. What are you eating?

Many of us develop other food intolerances, especially to dairy, soy, corn. The protein is similar in structure to gluten and your autoimmune system keeps attacking. I have to avoid quinoa too.

It may help to see an allergist too. Good luck!

yes i know i struggle with corn so i avoid that and ive just started drinking lactose free milk too. i dont know why ive been so sick for so long. it just makes no sense :( ive been at the doctors for an ultrasound because she was worried about my gall bladder but that was fine. its just so much pain..

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Lactose free milk, if from cows, can still be an allergen. You might want to try something nondairy. Almond is tasty.

MissBonnie Apprentice
MissBonnie
Posted
  • Author

Lactose free milk, if from cows, can still be an allergen. You might want to try something nondairy. Almond is tasty.

oh really? i didnt know this... perhaps ill just stop milk all together. i dont know where to get almond milk

Roda Rising Star
Roda
Posted

oh really? i didnt know this... perhaps ill just stop milk all together. i dont know where to get almond milk

You can always make your own almond milk.

Ingredients:

1 1/2 cups almonds

4 cups filtered water

sweetner to taste (optional)

Take almonds put in a bowl and pour boiling water over them. Let them sit for a good 5 minutes or so to blanch them. This will make getting the skins off easier. Drain and remove skins. Place almonds and water in blender and blend for several minutes. Strain almond milk through cheese cloth. I found jelly straining bags at a local hardware store and these work so much better. I do find that I have to squeeze the rest of the liquid out of the almond pulp. Add sweetner to taste. I put a little maple syrup or honey to give it just a subtle hint. Now what to do with all of that almond "pulp" that is left? I keep it and use it in baking where ever it calles for almond meal. Works great and no waste. I usually only make 1/2 a batch at a time.

If you are feeling poorly, you may just try giving up dairy completely since a lot of people don't tolerate it especially in the beginning. After you heal you may be able to reintroduce it.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

There is almond milk down under. Sometimes they put it with the regular milk, sometimes it is with the boxed long-life milk, sometimes it is in the organic/gluten free section of the store, but it is definitely available. So is rice milk, but don't buy Rice Dream because it is processed with barley and a lot of celiacs react to it. Lactose/dairy is the first thing to eliminate if you are celiac. The other things to try eliminating (one at a time and keep a symptom diary) are soy, corn, eggs, nightshade vegetables (potato, tomato, peppers, eggplant or aubergine.) Unfortunately, allergists really (most of them) don't know a lot about this stuff, they just know how to prick your skin and pur stuff in there amd ,make grandiose predictions besed on what happens then, and know nothing much about what happens when you actuallly eat food. :)

IrishHeart Veteran
IrishHeart
Posted

Three months is just a start to healing, Bonnie! I know how hard it is, but you will feel better in time. I struggled mightily with burning mouth, throat,stomach and awful abdominal pain (the gripping bloaty stuff where you want to cry) the first four months. Sorry to tell you that BUT REMEMBER, EVERYONE IS DIFFERENT and heals at different rates. I thought, Oh NO--what else is wrong with me? This is not working!! I am much older than you are and had more area to heal, no doubt!

Now, things are MUCH better.

I gave up dairy right away as the blunted villi cannot digest lactose and an IgG test said I was severely intolerant to soy (I know many celiacs are!) and so, those are out. I gain ground slowly each week.

There are many ups and downs with healing and the body is trying to "right the ship" so to speak and so, while we WANT TO BE BETTER RIGHT NOW, DARN IT :angry: ---we have to just stay the course.

An allergist will not help you much, I am afraid, unless you are having histamine responses?? Allergies are NOT the same as intolerances. Food intolerances behave in a different way. Do the food diary as Mushroom suggest. It will help you see a pattern.

One thing that helped me with digestion and the abdominal pain (because our systems have imbalances of gut flora) was to use digestive enzymes and probiotics.

Not sure if you use those..but they helped me relieve all that pain immensely!

Just some thoughts and I hope you feel better soon!

MissBonnie Apprentice
MissBonnie
Posted
  • Author

thanks everyone. i know its just the beginning of healing but its so hard to get through each day :(

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Drop the milk for sure! Some people are so lactose intolerant that they cannot even tolerate "lactose-free milk". It actually has very low amounts of lactose. Some people have trouble with casein instead of lactose--which the lactose free milk will STILL have. There are so many milk alternatives--almond milk, rice milk (just avoid Rice Dream brand), coconut milk, hemp milk...soy milk is a possibility too but I would not choose that one first since soy seems to be the next most common thing that some celiac suffers have to avoid.

MissBonnie Apprentice
MissBonnie
Posted
  • Author

interesting, i will def hunt down some almond milk today! this website has helped me so much thanks everyone!

MissBonnie Apprentice
MissBonnie
Posted
  • Author

tried rice milk today and loved it! its sweeter than regular milk which is yummy. thanks for getting me on that guys it will more than likely help my tummy as im great with all rice products just not corn and dairy

Dee777 Rookie
Dee777
Posted

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..

Oh, you poor thing :(

I am so sorry you are going through this. Hopefully I can give you some words of comfort! I am not a young thing like you, I am 47 years old. However, I was recently diagnosed with Celiac on January 25 of this year. I went gluten free that very day and never once knowingly put another bite of anything containing gluten in my mouth. However, on or about the 3rd of March, something triggered the godawfullest reaction I have ever had. I suffered from incapacitating diarrhea for a solid eight weeks. I couldn't leave my house unless I allowed myself to become totally dehydrated for fear of having an "accident".

I was losing a pound or more a day. I would take a mouthful of water and it shot right out my other end. I was going for IV fluid therapy and my doctor was at his wit's end with me. I saw a specialist who could not help me. I seriously believed I was going to die. Wow, it was so bad...

I made some wonderful friends in here who suggested several things to me that helped, the most important for me was a very good probiotic. You WILL get better, stick with the gluten free diet. The pain WILL go away, be persistent. It's hard not to be depressed, I know. Sometimes a good cry is what can give us the courage to take a deep breath and lift our chins up and carry on! I am thinking of you, and wishing you well, and do know that it DOES get better, I am proof! I feel ever so much better now, and each time I put a bite of food between my lips I give thanks that I am able to do it lol As my mom is fond of saying (and her mother and HER mother before her) "What doesn't kill us makes us stronger..." (I used to roll my eyes at that saying all the time as a kid growing up but now my kids are going to hear it a lot more coming from me )

Take good care of yourself and get better soon!

Dee

Korwyn Explorer
Korwyn
Posted

Bonnie - I too had to drop the dairy. I tested positive for antibodies to the protein in cow's milk but I didn't cut it out right away. After a few weeks of getting better when I went gluten-free I started to decline again. I had to eliminate cow's milk and soy. I can tolerate goat's milk (don't like the taste though) and goat cheese (love the taste!). But coconut milk is one of the best milk substitutes. If you can find organic, unsweetened coconut milk try it in place.

MissBonnie Apprentice
MissBonnie
Posted
  • Author

Oh, you poor thing :(

I am so sorry you are going through this. Hopefully I can give you some words of comfort! I am not a young thing like you, I am 47 years old. However, I was recently diagnosed with Celiac on January 25 of this year. I went gluten free that very day and never once knowingly put another bite of anything containing gluten in my mouth. However, on or about the 3rd of March, something triggered the godawfullest reaction I have ever had. I suffered from incapacitating diarrhea for a solid eight weeks. I couldn't leave my house unless I allowed myself to become totally dehydrated for fear of having an "accident".

I was losing a pound or more a day. I would take a mouthful of water and it shot right out my other end. I was going for IV fluid therapy and my doctor was at his wit's end with me. I saw a specialist who could not help me. I seriously believed I was going to die. Wow, it was so bad...

I made some wonderful friends in here who suggested several things to me that helped, the most important for me was a very good probiotic. You WILL get better, stick with the gluten free diet. The pain WILL go away, be persistent. It's hard not to be depressed, I know. Sometimes a good cry is what can give us the courage to take a deep breath and lift our chins up and carry on! I am thinking of you, and wishing you well, and do know that it DOES get better, I am proof! I feel ever so much better now, and each time I put a bite of food between my lips I give thanks that I am able to do it lol As my mom is fond of saying (and her mother and HER mother before her) "What doesn't kill us makes us stronger..." (I used to roll my eyes at that saying all the time as a kid growing up but now my kids are going to hear it a lot more coming from me )

Take good care of yourself and get better soon!

Dee

oh wow im so sorry you had to go through that! like you, i too have declined after 3 months of getting better. it sucks and i dont know what else i can do about it. its so hard to be in this much pain every single day. the only relief is when i sleep :( i hope i get better soon. right now it feels like ill be sick forever

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,694
    • Most Online (within 30 mins)
      7,748
    Aanhmcbride
    Newest Member
    Aanhmcbride
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.