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

Help/info!

Megan16

By Megan16
in Coping with Celiac Disease

Recommended Posts

Megan16 Rookie
Megan16
Posted

hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi Megan,

Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it?

Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again.

If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler.

Welcome to the forum! :)

Megan16 Rookie
Megan16
Posted
  • Author

yes, I was tested for it. They said after stomach surgeries and other major things causing that much stress on your body you can become intolerant to gluten. It happened to my aunt as well who was in a horrible car accident. They said you can always carry the gene in your body and having that much stress on your body can start it.

GFinDC Veteran
GFinDC
Posted

That's good Megan, that you were tested.  Many people have the genes, but only some develop the disease.  Your doctor is right about celiac often appearing after some kind of physical stress or illness.

The tricky thing about eliminating one food is that you body may be reacting to multiple foods.  So not getting better could mean you just eliminated one problem instead of 3.

It's not unusual to have digestion issues for quite a while after going gluten-free.  Our guts are damaged and that damage has to heal.  But it can't heal until the immune system stops it's attack.  The immune system attack/reaction can keep going for weeks to months.  So it can be a slow recovery.  Often people report getting better and then getting worse and going back and forth on symptoms.

What doesn't help is that our bacteria in our guts can get really screwed up by the disease process.  We can't properly digest things so there is more undigested food for bacteria to thrive on.  Avoiding sugars and carbs can help with that issue.

Here are some starting the gluten-free diet tips for the first 6 months.  Some of these you have already taken care of:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

Megan16 Rookie
Megan16
Posted
  • Author

thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?

GFinDC Veteran
GFinDC
Posted

Hi Megan,

Regarding dairy, celiac disease damages the villi that make the lactase enzyme that digests milk sugar (lactose).  So sometimes people can't digest dairy well when they first start the gluten-free diet.   Over time that may change as you heal.  The ability to digest dairy doesn't always come back, but it may.

Throwing up can be caused by excess gas in the stomach.  That's pretty common when starting the diet.  Sugar and carbs will make it worse.  Udi's bagels are made of various flours so they are full of carbs.  Carbs are turned into sugar in the body and that feeds the bacteria, hence the gas.

You could be reacting to various foods, so eliminating one problem food is not going to fix all the problems.  I think it would be more helpful to start by following the tips in my earlier post than to  try a full fledged elimination diet at this point.  Elimination diets can take a while to do.

If you can stick to eating meats, vegetables, nuts for now that is a good thing.  No processed foods (like Udi's) or other baked goods.  This is probably the fastest way to get better and learn what is safe to eat.  Once you are feeling better for a few weeks then you can try adding in one new food a week and see how it goes.  The gluten-free diet is a lifetime commitment so you may as well start out right and take your time.  Whole foods are a good way to go at the beginning.  If you cook your own food you know what is in it.  That's important to know for us.  Avoiding any processed food with more than 3 ingredients is also good.  The fewer ingredients you are eating the simpler it is to figure out a problem.

I wouldn't worry about the idea of the throwing up thing making you react to dairy.  Celiac is known to cause a problem with dairy intolerance.

 

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Megan16 said:

thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?

I buy Udi's gluten-free bread.  But I feed it to my gluten-free hubby.  Sure it's gluten free, but I discovered that I react to the Xanthan Gum that is used to replace what gluten does to bread (that stretchy binding thing....). It does not bother my hubby at all!   I stick to gluten-free flours and use other gums.  But the best thing is to stick to whole foods (avoiding all processed foods, even gluten-free) until you are feeling better.  Your gut is damaged and needs to heal.  

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

Celiac.com Sponsor (A8-M):


Alwayssomething Contributor
Alwayssomething
Posted

Is the peanut butter from your pre gluten free days and maybe cross contaminated? 

 

Megan16 Rookie
Megan16
Posted
  • Author

Thank you so much for all the info! I will defiantly be taking your advise and seeing if that helps me!

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. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      309

      Terrible Neurological Symptoms

      Update about this condition. Into late 2025/early 2026 the symptom, which is a clear stocking/glove pattern (it is now frequent in my hands as well as feet and lower legs) has basically outgrown the medication (Duloxetine, now at max dose of 120mg/day). I notice that strong pain occurs when my mind de-focuses in particular, then if I focus awareness...
    2. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Reverse Osmosis (RO) Water

      I did another Google Search and found this on the GE appliance website regarding their GE® RPWFE™ REFRIGERATOR WATER FILTER 3-PACK. Just go down the QA section and type the word gluten in the search. Here are the results: As mentioned in my last post, if you plan to use a filter it is a good idea to contact the manufacturer.
    3. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Reverse Osmosis (RO) Water

      I am sorry to hear you went through that @YoshiLuckyJackpotWinner888. That could not have been an easy thing to figure out. I just used Uncle Google to perform this search: "Can water filters contain gluten?" Here is the AI overview that was returned: Yes, some water filters can theoretically contain or be processed with gluten. While rare, certain...
    4. Scott Adams
      0

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    5. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      Most people are already deficient in minerals. I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter. I happen to get over 100% of rda vitamins and minerals. I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,578
    • Most Online (within 30 mins)
      7,748
    BilboB
    Newest Member
    BilboB
    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

    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Update about this condition. Into late 2025/early 2026 the symptom, which is a clear stocking/glove pattern (it is now frequent in my hands as well as feet and lower legs) has basically outgrown the medication (Duloxetine, now at max dose of 120mg/day). I notice that strong pain occurs when my mind de-focuses in particular, then if I focus awareness again, the pain becomes inhibited. Pain is much worse after meals as has always been the case, and particularly after exercising for some time - the effect is accumulative over weeks. Even when my energy is excellent with no fatigue. Infact, last year doing cycling, it was the increased pain alone that made me have to reduce what I did. I got very fit and energetic, but had awful stabbing foot pains on the surface of the big toe, or sometimes heel, or anywhere in the skin of the foot and sometimes lower leg. These are not muscle pains or internal to the foot or leg. They are happening on the surface. I've had a referral back to the neurology department at my local hospital but the waiting list is a year long. I went back to the doctor who has been updated on everything and has looked over previous and recent blood tests, skin biopsy, and other tests. All tests reveal there is no nerve damage. Infact my nerve density in the biopsy showed much better than average nerve health. There are no nutritional deficiencies and I regularly supplement my diet with Vitamin D, B1 and B2, and Magnesium Glycinate. None of these have helped at all. The pain syndrome just outgrows everthing. It has now become investigated as a chronic pain syndrome with severe central sensitization. It takes less and less provocation to produce the same symptoms, which is indicative of a fault in the descending inhibition of pain mechanism and nociplasticity in the amplification of pain signals. As such I'm being referred to a pain specialist and will see what they recommend.
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I did another Google Search and found this on the GE appliance website regarding their GE® RPWFE™ REFRIGERATOR WATER FILTER 3-PACK. Just go down the QA section and type the word gluten in the search.  Here are the results: As mentioned in my last post, if you plan to use a filter it is a good idea to contact the manufacturer.
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am sorry to hear you went through that @YoshiLuckyJackpotWinner888.  That could not have been an easy thing to figure out.  I just used Uncle Google to perform this search:  "Can water filters contain gluten?" Here is the AI overview that was returned: Yes, some water filters can theoretically contain or be processed with gluten. While rare, certain refrigerator or pitcher filters may use wheat starch as a binder for the activated carbon. For individuals with high sensitivity or celiac disease, contacting the manufacturer to confirm if they use wheat or corn starch is recommended.  Potential Risk: Some refrigerator and aftermarket filters may use wheat-based components to bind carbon, potentially causing issues for those with celiac disease or gluten sensitivities. Alternatives: Many water filters, such as those from AquaTru Water, are explicitly manufactured to be free of gluten, corn, and soy. General Safety: Most standard water filters are safe, and the risk of significant gluten contamination is low, but not zero for highly sensitive individuals.  If you are highly sensitive, checking with the specific manufacturer of your filter is the safest course of action. --End Quote
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      Most people are already deficient in minerals.  I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter.  I happen to get over 100% of rda vitamins and minerals.   I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined. I don’t know anyone else that does. The rda is closer to 4700 mg a day. For anyone else that might be deficient, I suppose tap water might be a better option.  I personally can’t stand the taste of most city tap water sources.  I don’t mind mineral water and prefer it when possible. I recently found out we would need to drink 5 liters of San Pellagrino mineral water a day to get enough lithium to satisfy the suggested 1 mg a day. Unfortunately, this and other mineral waters can also have trace amounts of uranium that occur naturally in nature. Uranium is not a good thing to have in your water. I wouldn’t want that or naturally occurring lead in my water.  There is no perfect solution for drinking water.  Smart water distills and then adds back in some electrolytes.  I could evaporate two gallons day of tap water or mineral water and the remaining sodium, potassium, calcium, magnesium, iron, etc… wouldn’t amount to what I already consume on a daily basis. I’m not worried about drinking distilled water. 
    • knitty kitty
      Water filters are a potential problem for Celiac Disease

      By knitty kitty · Posted

      Reverse osmosis water pulls electrolyte minerals out of the body.  If used for cooking, RO water will even pull even more electrolytes out of the food.  If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance.  The symptoms of Electrolyte Imbalance are similar to those that occur with being exposed to gluten.   Also consider that many people with Celiac disease have malabsorption issues and may already be low in electrolytes.  Exposure to RO water may create some health changes more quickly than in healthier individuals.   RO water impacts the body in many ways.  Read this fascinating study.   Long-Term Consumption of Purified Water Altered Amino Acid, Fatty Acid and Energy Metabolism in Livers of Rats https://pmc.ncbi.nlm.nih.gov/articles/PMC11122726/ Drink mineral water.  
×
×
  • 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.