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

The One Symptom That Won't Go Away


lilliexx

Recommended Posts

lilliexx Contributor

I am not really sick anymore, but still having major gas and loud stomach growling. it happens pretty much when i eat anything. my stomach doesnt hurt, but the gas is so bad it feels like something is alive in side of me. (yikes)

i am not sure if this lingering symptom is just something that takes longer time to heal..or if it is something else not related to gluten.

i have been gluten free for 6 months...and am very careful.

if anyone else has this problem, any advice would be helpful.

thanks a lot

lillie


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

I still have gas and stomach growling, but I found it got a lot better after I eliminated lactose. I think the gas a bloating will go away with time. Hopefully B)

minibabe Contributor

Medaka if you have alot of bloating and stomach growling you think that it is driectly related to lactose? That is one of my huge problems. I feel bloated every day, there is never a day when i feel great. But also i do eat cereal in the morning. (Dont worry Wheat Free) :) How long did it take for your symptoms to start going away?

Carriefaith Enthusiast

minibabe,

I find that when I eat any amount of lactose I get extreme gas, bloating, stomach growling, and then diarrhea <_< Not fun. By any amount of lactose I mean even milk chocolate or candy with lactose listed as an ingredient (I am super sensitive)! I avoid gluten and lactose like a plague.

Lactose intolerance is common in celiacs. When celiacs eat gluten, it flattens the villi in the small intestine. The enzyme that breaks down lactose in the body is located at the tip of the villi in the small intestine and when the villi are flattened, the body can't naturally break down lactose. Therefore, many celiacs are temporarily lactose intolerant until the villi heal. The healing may take time depending on the extent of villi damage.

Try avoiding lactose for a few weeks it may just be your problem! Some people use lactaid, which is gluten free. Lactaid doesn't work for me.

(I still have gas/bloating/diarrhea but my intestines are still sensitive due to all the gluten I ate before I went gluten free resulting in temporary IBS).

lilliexx Contributor

i dont eat much lactose iether, i drink soy milk and eat dark chocholate. i do eat cheese , but i dont think cheese and yogurt effects people with lactose intolerence.

it doesnt really matter what i eat. i seem to get the gas after every meal. :(

i hope it goes away with time, but in the mean time is there something i should take for this?

lyoung2 Rookie

I am having the same problem. I have been gluten-free for 4.5 months. I never did have a gas issue until 5 days ago. The heartburn is killing me!!!!! I don't do dairy, and have tried eating more, eating less, nothing is helping.

Any suggestions?

Laura

cdford Contributor

I had to go lactose free for several months at the beginning, but then was able to add back small amounts of dairy. Now after well over a year, I can handle it well unless I eat certain cheeses. The advice from these others is a good place to start. It has helped four of our family members. Hopefully you will be like me as you heal and be able to add back some dairy over time.


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



Celiac.com Sponsor (A8-M):



kvogt Rookie

Be it lactose or some other food, there is probably something in your diets that is giving you trouble. Try eliminating carb foods one at a time and see if that makes a difference. Gas comes from the lower quadrant and is produced by flora (bacteria) found normally there. Food for these bacteria are undigested foods, particularly sugars (beans excel at this) and carbs, which get through because of our digestion problems. We can tend to overconsume carbs, which exacerbates the problem.

lilliexx Contributor

well that makes sense, i guess. when i did the south beach diet for a few weeks my gas went completely away. i shall try to reduce my carb intake again, and see what happens.

thanks for the input.

melzie Newbie

I was wondering how a person could be lactose intolerant and still eat cheese? I have elimanted almost all except fot meat and veggies and I have the worlds worst gas and the bloating and stomachache is unreal? I have read here some of you have been gluten-free for ten months? Did you all decontaminate your kitchen too? I am at such a loss with this disease and any help would be great..I was sick for fourteen months with test after test until I went for a second opinion and got the celiac disease dx..Blood test and biopsy were positive..I still sometimes dont believe I have it cause nobody in my family has stomach problems at all? Any other reason I could have gotten it? I have the chills everday and in the first two months of being sick I lost thirty pounds?

Any suggestions are helpful...

Melanie gluten-free since Dec 04

  • 4 weeks later...
newby Newbie

Hi Everyone,

I would suggest that a lot of you do have an allergy to lactose and probably caesin - a milk protein. Caesin is found in a lot of soy products and other products. Because celiac disease causes a dairy allergy too, I would suggest you to get food allergy blood work for the top 100 foods.

Also, my naturopath put me on betaine HCl, which I take with a meal, and it alleviates the bloating and gassy heavy stomach.

"supplementing with betaine HCl (a compound that contains hydrochloric acid) often relieves the symptoms of heartburn and improves digestion, at least in people who have hypochlorhydria (low stomach acid). The amount of betaine HCl used varies with the size of the meal and with the amount of protein ingested. Typical amounts recommended by doctors range from 600 to 2,400 mg per meals."

Take care :)

~ Newby

melzie Newbie

Hello!!

I will mention that to my Dr..Right now they are retesting me cause an expert at the Mayo in Rochester,Mn isnt too sure I have celiac disease...I just had all the blood work and it was neg which the only test I had originally come back positive was the TTg was 50 and now its 16....They are doing the Gene test too and I had a bone scan so I dont know..

The lingering Question, Do i have celiac Disease or do I not??

rmmadden Contributor

I have gas/belching with my celiac disease and it's not much fun. I was told that I have gastritis in the stomach (diagnosed from my endoscopy test) and it seems like it varies in severity depending upon how much stress I have and what I eat. Try to watch both is the only advice I can offer. Mine has been better the last few weeks as I am done with the traveling part of my job (Creating The Stress) until late fall and, I've cut back my diet a bit to try and prevent any flare-ups related to food.

Hopefully we both have better days ahead of us!

Cleveland Bob :)

Maggie1956 Rookie
Lactose intolerance is common in celiacs. When celiacs eat gluten, it flattens the villi in the small intestine. The enzyme that breaks down lactose in the body is located at the tip of the villi in the small intestine and when the villi are flattened, the body can't naturally break down lactose. Therefore, many celiacs are temporarily lactose intolerant until the villi heal. The healing may take time depending on the extent of villi damage.

I'm beginning to wonder if I'm lactose intolerant. When I had the endoscopy, the villi were 'total atrophy'. That's mean that they are totally flattened, right?

Therefore, would it be reasonable for me to assume that the part of the villi which helps break down lactose is missing/damaged too??

I DO get pain when I have a lot of dairy. Cheese gives me pain and constipation.

:blink::angry::( My doctor has diagnosed me, but he hasn't spoken to me since then about celiac disease. So, I'm sorting myself out with a lot of help from this group.

hthorvald Rookie

The next time you see your doctor, you may want to ask him about a pro-biotic. Apparently, Celiacs need to build up the necessary bacteria in their intestinal tracts. Sometimes if it's out of whack, bloating and gas can occur. Lactose might be a consideration, but if you elminate it and still have problems, you may want to give pro-biotics a try. They are available at your health food store. But check with your GI doc first.

Maggie1956 Rookie

Thankx for that info hthorvald. I do get a lot of gas, bloating etc after eating any dairy. How long would I have to go without dairy to see if it makes a difference?

hthorvald Rookie

I'm not sure, I'm not lactose intolerant any more (thank goodness). I stopped eating anything with lactose in it for the first couple of months after being diagnosed and then slowly introduced it back into my diet. I've had little problems since, but then again, I only eat yogurt and, occasionally, cheese.

I had a huge problem with eggs after I was diagnosed. Because I couldn't eat my typical oatmeal and english muffin, I switched to grits and gluten free bread. To change the diet slightly, I'd have a boiled egg everyother day. Boy did it tear up my stomach. I should try again, since it's been a few months, but am a little gun shy.

Good luck with your solutions.

Helen.

tom Contributor
Thankx for that info hthorvald. I do get a lot of gas, bloating etc after eating any dairy. How long would I have to go without dairy to see if it makes a difference?

I saw great change in 2 days and felt a TON better in 5.

Gluten-free Casein-free diet is very common. (gluten/casein)

The weird part is that alleged non-dairy creamers actually are not. The ingred labels all include the phrase "a milk derivative" after the Sodium Caseinate listing.

But besides skeptically reading labels of products claiming "non-dairy", it isn't too hard. I use Silk brand soymilk in coffee, cereal etc and it's great.

melzie Newbie

Hi all

Well right now I am in the midst of gettting a wrong diagnosis...I had my stuff sent to a specialist at the Mayo in Rochester, Mn and he looked at my biopsy and he isnt sure i have the disease..He ordered some tests I had the gene test and all the blood tests, all the blood came back neg so I am waiting for the gene test now and I had a bone scan so who knows..'

VEry frusterated now so I started drinking beer again and i havent had a problemn yet I dont want to attempt eating gluten yet till I know so who knows I shall know soon if I have celiac disease or not..

Crazy!!

debmidge Rising Star

Melzie, If I understood you correctly, you are drinking beer but avoiding gluten. Beer=gluten (unless you are drinking the special gluten-free beer).

RE: Cheese consumption. I've been lactose intolerant (severely) for over 20 years and cannot digest soft, moist or creamy cheeses -- like Ricotta or cottage or some muenster unless I eat a Lactaid pill with it. And the Lactaid pills can be "pot shot" meaning that they don't work all the way sometimes.

I learned that the harder in texture the cheese is, the less lactose it has. So a hard parmesan (a grating cheese) will have less lactose than american cheese slice. I don't know if Lactaid brand cheese is gluten-free.

melzie Newbie

Hi..

I am on the gluten challenge right now which isnt all its cracked up to be....I have a Dr that dx me with Celiac and I have a specialist that said he isnt sure it is celiac disease??? I am so lost so yes i am drinking beer and that doesnt bother me but I had alsagna tonight and about 1 hour or so later and now I want to curl up and cry..My tummy doesnt like me at all...I am suppose to go to The Mayo in Rochester mn and have more tests but right now I am thinking screw the challenge and forget the Mayo..

Beer tastes great and it doesnt bother me, but doesnt mean I dont have the disease either..

debmidge Rising Star

Melzie,

Do you have symptoms other than gastro?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,669
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.