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

Symptoms still persisting

LilyBujak

Recommended Posts

LilyBujak Newbie
LilyBujak
Posted

I was diagnosed with celiac disease about a month ago and have adhered to the gluten free diet ever since. However, I have not felt ANY better. I have constant stomach pain, fatigue, and severe acid reflux and bloating. Although I did notice a slight difference for a few days, I am back to the symptoms. They are worse than when I went in and got diagnosed. Last night I ate dinner (gluten free I double checked) and spent the rest of the night throwing up and having completely watery diarrhea. I am 5’6 and weighed about 135 before diagnosis and am down to 114 today. I was 118 when my dietician checked on Friday. Is this something I should go to the doctor about again? Please help cause I’m starting to think I will never get better!!!!! 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
20 minutes ago, LilyBujak said:

I was diagnosed with celiac disease about a month ago and have adhered to the gluten free diet ever since. However, I have not felt ANY better. I have constant stomach pain, fatigue, and severe acid reflux and bloating. Although I did notice a slight difference for a few days, I am back to the symptoms. They are worse than when I went in and got diagnosed. Last night I ate dinner (gluten free I double checked) and spent the rest of the night throwing up and having completely watery diarrhea. I am 5’6 and weighed about 135 before diagnosis and am down to 114 today. I was 118 when my dietician checked on Friday. Is this something I should go to the doctor about again? Please help cause I’m starting to think I will never get better!!!!! 

It can take months to heal.... but who made this supposedly gluten-free dinner?  There is more to it than just gluten-free ingredients.  You might be better off sticking to some simple gluten-free food you fix yourself for a few months.

Read the newbie thread for some tips.

 

Read the newbie thread for some info.  

 

Ennis-TX Grand Master
Ennis-TX
Posted

Gluten free medically is different then fad,  your food has to be prepared in gluten free dedicated cook ware. Gluten is a protein smaller then a germ. You sort of have to decon your kitchen and replace several kinds of cook ware like new colanders, wooden spoons, scratched pots, pans, Tupperware etc. New condiment jars (butter, jam, nut butter jars often get contaminated by spoon to bread/gluten food to jar. etc.
Eating food prepared by someone else in a non gluten free cooking area on glutened cookware....gets you sick and one exposure can leave you sick for weeks to months.
When you start going gluten free, then reintroduce gluten with this disease, your immune system goes on a rebound attack and the symptoms get much worse. SO after going gluten free, exposures to even tiny amounts will normally have much worse reactions.

For now go to a whole foods only diet, eat only food you cook, avoid processed foods for now til you heal a bit. Simple meals low on sugars and carbs if you can to ease the bloat. Get crockpot liners and do crockpot meals of chicken and veggies in bone broth, or crockpot roast. Sheet pan meals on foil lined sheet pans of soft meats and veggies. Eggs are nice, and can be done hard boiled cand chopped up in meals, scrambled, or omlettes.

Few simple hacks and to start off cheap.
Foil Line Baking dishes/cookie sheets for safe cooking and easy clean up
Freezer/butcher paper down on your counter for a safe prep area and again easy clean up
Crock pot liners for your crockpot for safe cooking area, and easy clean up
Nordicware makes microwave cookware for quick cheap, and safe ways to start off, they have omlette makers, steamers, grill plates with covers, rice cookers etc.
PS
It is also not uncommon for us to develop other food issues, sensitivities and intolerance issues. Keep a food diary and record what you eat, how you fix it, season it etc. and how you feel and time frames. Might help you find out other foods that are bothering your. Also remove dairy and oats, Dairy is a common issue as the enzymes to break it down are not really going to work that well with damaged villi, you can try reintroducing it when they heal. Oats are commonly contaminated.
Open Original Shared Link
Open Original Shared Link

MichelleSC Newbie
MichelleSC
Posted

Oh hon I am so sorry you feel that way! I had the exact same symptoms before I was diagnosed. There are a LOT of foods that have hidden gluten - buillon cubes got me many times before I found out some can have wheat in the yeast. Drinks and drink additives like creamer and stuff for coffee too. If you haven’t already, find an app you like that has a setting for allergies (I use the ShopWell app) and scan all the food barcodes of what you’ve been eating. I’ve found many surprising foods with gluten, that I thought were safe. 

 

That being said, it can take weeks or months to fully heal, and it’s possible you have an IBS type thing going now, from the intestinal damage. It took me months for those symptoms to fully go away. I felt better immediately, of course, but it was a long road. I would call or email your dr, and see if they want to see you again. I have a medication from my dr, that I take if I accidentally eat gluten - it stops the intense stomach pain and cramping and diahrrea, if I take it within 15-20 minutes of eating gluten. Called Dicyclomine. It helped my stomach calm down fully initially, and now I only take it when I eat gluten on accident. 

Hope this helps! Keep your chin up, it does get better and easier, I promise. It’s been 4-5 years since I was diagnosed, but I’ve had it my whole life. So I totally understand! Good luck!! ? ~Michelle~

LilyBujak Newbie
LilyBujak
Posted
  • Author

Thank you for being the only one who didn’t accuse of glutening myself!!! I follow a STRICT diet. My titer numbers were 1:320. I have separate cookware, toasters, and utensils. My grandfather and grandmother, who I live with, have adopted the diet for dinners so there is no chance of cross contamination. If there was any doubt that I had glutened myself I would not have posted on here looking for answers! I understand that it takes time to feel better but symptoms are worse than before I was diagnosed! I will check with my doctor and thanks for the input :)

kareng Grand Master
kareng
Posted
18 minutes ago, LilyBujak said:

Thank you for being the only one who didn’t accuse of glutening myself!!! I follow a STRICT diet. My titer numbers were 1:320. I have separate cookware, toasters, and utensils. My grandfather and grandmother, who I live with, have adopted the diet for dinners so there is no chance of cross contamination. If there was any doubt that I had glutened myself I would not have posted on here looking for answers! I understand that it takes time to feel better but symptoms are worse than before I was diagnosed! I will check with my doctor and thanks for the input :)

 

How could we know all that from your first post?  It sounded like you ate at a restaurant or a friends house. Most people who have only been gluten-free for a month are still trying to figure it out.  

kareng Grand Master
kareng
Posted

One thing to consider is that you may be eating very differently than before. Healthier but a sudden diet change can cause issues.  For example, more fiber, less fat, etc.

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

Celiac.com Sponsor (A8-M):


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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    3. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.