Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Feeling Worse And Wose... Need Help

Kate35

Recommended Posts

Kate35 Apprentice
Kate35
Posted

Hello,

I have been gluten free for 10 months now and I was feeling better for awhile, most of the digestive symptoms gone, but lately I feel like I have been getting worse and worse. It started in Deecember when I realized that the vitamins that I started taking contained wheat (Centrum Chewables, please be careful!!!!), but I quickly discontinued them and most of my symptoms seemed to subside in a week or two, but then on and off I'd get sick for no apparent reason. We never go out, our whole house is completely gluten free, I even bought some new pots and cooking utencils... I cook almost everything from scartch and I don't use anything packaged unless it is specifically labeled as gluten free. I don' use much of even gluten free packaged food either, I stick to the whole food diet. I am really not sure what I am doing wrong... For example, on friday we had some hot dogs (Hebrew National because they are gluten free according to multiple sources) and I felt horrible all night and most of Saturday morning. Then I did not eat anything on Saturday other than baked potatoes and white rice and felt ok (not great) but then I made an apple pie on Sunday from Bob's Red Mill all purpose flour (which i made many times before and was totally fine) and had such a horrible night that my hubby wanted to take me to the hospital. Don't remember last time I was in such a pain post diagnosis... Then I was not eating yesterday and today (skipped Valentine reservations...) and was okay today until I ate one (!!!) meatball that I myself made from scratch (there is literally nothing there I even made my own tomato sauce!)and 2 hours later all my digestive symptoms returned with the new intensity...

I am so scared... what could it be? Has it happened to any of you ever? Shall I go to the doctor? Shall I have another gastroscopy? Last one was 10 mo ago when they diagnosed celiac by accident...

Thank you for your time!

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

I got sensitive to lower levels of gluten as time went on. I became unable to eat things like hot dogs and flour mixes. I also have problems with tomatoes from the store though I can eat them from my garden. I stick to a whole foods diet. I try different things only one per week so that I can tell if it bothers me. Best wishes.

ravenwoodglass Mentor
ravenwoodglass
Posted

I don't tolerate the Bob's flour because the garbanzo flour, sorghum flour, and fava flour are not something my system can handle. You might want to try a flour without all the bean flours like Tom Sawyer or Pamela's baking mix and see if that is better tolerated. While the hot dog's are gluten free they may just be too greasy for your system right now. It can be tough when we are healing and I hope you are feeling better soon.

over50 Rookie
over50
Posted

Hello,

I have been gluten free for 10 months now and I was feeling better for awhile, most of the digestive symptoms gone, but lately I feel like I have been getting worse and worse. It started in Deecember when I realized that the vitamins that I started taking contained wheat (Centrum Chewables, please be careful!!!!), but I quickly discontinued them and most of my symptoms seemed to subside in a week or two, but then on and off I'd get sick for no apparent reason. We never go out, our whole house is completely gluten free, I even bought some new pots and cooking utencils... I cook almost everything from scartch and I don't use anything packaged unless it is specifically labeled as gluten free. I don' use much of even gluten free packaged food either, I stick to the whole food diet. I am really not sure what I am doing wrong... For example, on friday we had some hot dogs (Hebrew National because they are gluten free according to multiple sources) and I felt horrible all night and most of Saturday morning. Then I did not eat anything on Saturday other than baked potatoes and white rice and felt ok (not great) but then I made an apple pie on Sunday from Bob's Red Mill all purpose flour (which i made many times before and was totally fine) and had such a horrible night that my hubby wanted to take me to the hospital. Don't remember last time I was in such a pain post diagnosis... Then I was not eating yesterday and today (skipped Valentine reservations...) and was okay today until I ate one (!!!) meatball that I myself made from scratch (there is literally nothing there I even made my own tomato sauce!)and 2 hours later all my digestive symptoms returned with the new intensity...

I am so scared... what could it be? Has it happened to any of you ever? Shall I go to the doctor? Shall I have another gastroscopy? Last one was 10 mo ago when they diagnosed celiac by accident...

Thank you for your time!

over50

I have been gluten-free now since June 2010, and also have found out that other foods bother me, which they didn't seem to before. Perhaps it is that the body having dealt with one intolerance then starts dealing with the others of which we were not aware before. I have had days of feeling really unwell alternating with days where I feel fairly reasonable. I envy those people who feel better after a few weeks. I'm still trying to get a handle on my weight as I've only gained 3 pounds in all this time. I suspect that various foods will be off my list for a while, such as raspberries (way too acidic) and also strawberries, tomatoes, maybe soy, though haven't confirmed that yet, chocolate (groan, sigh...) I also cannot handle dairy so that is out too. Your response sounds pretty much par for the course, though indeed each person with Celiac is dealing with different symptoms from each other. I would stay with foods that agree with you, keep cutting out those that do not and avoid as someone else suggested foods that could be too greasy. Our systems are now very delicate and it seems that many substances can upset that fine balance. Take care.

Takala Enthusiast
Takala
Posted

You are probably either getting cross contaminated or have a secondary problem you have not figured out yet.

Once you figure out where it's coming from, you will be okay.

You may want to go ahead and list what you normally eat every day so it can be trouble shooted.

I don't do hot dogs unless they are a gluten free labeled product, like an organic sausage made with turkey, hot dogs are very, very tough on the system, and I am on the high end of being able to eat most things as long as I avoid the few things that don't sit correctly. An example of this is flax meal for me, which is a very common ingredient in commercial gluten free baking. Flax this, flax that, bleah ! :ph34r: Do you know how long it took me to figure this out ? What a nuisance !

Bob's all purpose is garbanzo, potato, tapioca, sorghum, fava, manufactured in a facility that also uses nuts and soy.

Some people really do NOT tolerate fava beans in garfava flour, the garbanzo- fava blend, and I would also try avoiding that, along with soy, and see what happens. Garbanzos (chickpea) are nice. Fava, bleah ! <_< Pamela's has dairy and may not be a good substitute for the people avoiding all dairy.

Look what is in the Hebrew National Hot Dog-

Beef, Water, Contains 2% or Less of: Salt, Sodium Lactate, Spice, Hydrolyzed Soy Protein, Paprika, Sodium Diacetate, Garlic Powder, Sodium Erythorbate, Sodium Nitrite, Flavorings.

Would somebody please show me where in the Old Testament there is hydrolyzed soy protein ?! bleah ! :blink:

What did you do with the pie crust shortening ? Soy butter ?

You are going to white starches when you feel ill, and you may be better off going to a really lower carb thing like just fruits, nuts, and vegetables and clear tea until you get a handle on it.

The meatball story. I was in a place that advertised as having gluten free deli options, but by my quiz of the counter help I ascertained that they were nice but clueless and I was going to get cross contaminated big time, so I opted for a pre packaged gluten-free item out of the freezer display case. There was a loaf of bread from a good gluten-free bakery I had eaten at before, that I knew was okay, after studying the label, so we got that and a pint of Coconut ice cream. But they had tubs of house made meatballs made with another commercial gluten-free bread item, just labeled as "bread crumbs brand "x," I know from the label ( I bought a loaf just for the label and had my spouse eat it) I will not be good with, at all, and combined that with the cross contamination problem and it would have been a wreck.

It's not the ground meat, it is the OTHER stuff that goes in it.

You could also be sensitive to guar or xanthan gums, but there are ways to work around that. But try ditching the soy and fava first.

Kate35 Apprentice
Kate35
Posted
  • Author

Thank you all so much for your suggestions! Your support means so much to me! I am on the elimination diet now, will see what happens...

Enjoy the holiday weekend!

zus888 Contributor
zus888
Posted

What kind of pain are you experiencing? I had a gallbladder issue and it was AWFUL! I'm just wondering if you should go to your doc to check up on other issues. Gallbladder problems should be easy to rule out with an ultrasound.

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. trents
      - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which...
    2. barb simkin
      - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      I had both the genetic genes for celiac. My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report. I also had polyps in 3 places throughout my large...
    3. trents
      - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct? You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity...
    4. pweidema
      - pweidema commented on Scott Adams's article in Autumn 2025 Issue
      1

      The Unexpected Gluten Traps in International Snacks: What Not to Bring Back From Vacation

      Very informative. Thank you!
    5. barb simkin
      - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,332
    • Most Online (within 30 mins)
      7,748
    Roxy79
    Newest Member
    Roxy79
    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
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
×
×
  • Create New...