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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • 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. 
×
×
  • 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.