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

So Frustrated I Want To Cry...help With Digestive Recovery!


GFathlete

Recommended Posts

GFathlete Rookie

Hi all,

I posted before about this but I am getting worse...

I am so painfully and horribly gassy! I cannot be in public places for fear of releasing an embarassing stream of gas.It is awful and painful and makes me want to cry. I have been getting small bouts of D as well.

Up until about 3-4 weeks ago I was feeling a lot better being gluten free but all of the sudden I feel all out of balance

A few things of note:

- I haven't changed anything else in my diet...no strange additions or anything. The only change is I have added Lactaid Milk instead of regular cows milk

- I have started probiotics a few weeks ago (Nature's Bounty Liquid Probiotic & Nature's Bounty Chewable Tablets)

- No chance of CC...I prepare all foods myself! I am extremely careful!!

- I cannot afford any more tests or doctor's visits...I have already spent a fortune since I don't have insurance

- I initially had food allergy tests before my diagnosis and nothing came up out of the ordinary.

PLEASE HELP!!! I am so desperate...


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

If I were you, I would cut out all of the dairy. Lactaid milk does not help if you are casein intolerant. I thought that I was lactose intolerant too and used Lactiad milk and pills. Come to find out, it was casein all along. I had bad gas and a lot of pain. I recently drank a cup of milk to test it out and it came back. I was in a lot of pain. Also, corn and soy can cause gas, cramps and pain.

I hope you feel better soon!

saintmaybe Collaborator

There's another thread I posted recently in "Coping With" where I figured out a lot of people trend towards worse after 3-6 months gluten free. I know I did. It's a combination of increasing sensitivity to cross contamination, as well as the development of additional food intolerances. In my case, I became highly intolerant to corn gluten as well as wheat/barley/rye. That's not to say that's what your problem is, of course. Many people have issues with casein, soy, nightshades, tomatoes, fructose malabsorption, or nuts. WHat you're going through, while frustrating (believe me, I get it), is completely normal.

Many people recommend going back to an elimination diet,like the early days of celiac diagnosis, to nail down the exact culprit of your digestive issues. And remember, the more ingredients something has, the more likely it is to bug you.

GFathlete Rookie

Thanks that makes me feel better, I am just overwhelmed at where to start because I guess it could be anything?

I also just read an article saying strong probiotic in combination with digestive enzymes might help?

Anyone have any experience with this?

Skylark Collaborator

Gas happens when sugar and starch isn't broken down or absorbed in your small intestine. It gets to your colon and bacteria living there break down the starch, producing gas.

There are two reasons sugars don't get absorbed. The first is if you're missing enzymes and important bacteria, leading to problems digesting complex sugars like lactose, starchy foods, and often beans. Lactose intolerance is the most common form of this, but people with gluten intolerance/celiac are often generally bad at digesting starch. Damaged small intestine doesn't make enzymes properly. Adding a probiotic and digestive enzymes helps but as you've noticed it's not a fix. The enzymes are just a band-aid.

You can shift to Specific Carbohydrate Diet (SCD) Open Original Shared Link or GAPS diet Open Original Shared Link for a while to help heal your gut and re-balance bacteria. The diet is grain-free/refined sugar-free/starch-free. You get your carbs from veggies like squash and carrots, fruit, and a little honey. I'm on GAPS now and I have no gas at all unless I cheat and eat rice when I go out for sushi.

The other reason people can be gassy is fructose malabsorption. Again, the fructose you don't absorb gets to the colon where bacteria break it down. There is supposedly a hydrogen breath test for it, but it's just as easy to test with a low fructose diet. Fructose malabsorption requires a diet that is low in fructose, fructans, and fructo-oligosaccharides. The easiest way to test for it is to eat meat, nuts, white rice (not brown), white potatoes, eggs, lactose-free dairy, and low-fructose vegetables like celery, endive, pea pods, spinach, and swiss chard. No fruits, sweets, whole grains, honey, onions, or high-fructose veggies. You may also need to set the probiotic aside for a bit if it has fructo-oligosaccharides to feed the bacteria. If you get dramatically better in a week low-fructose you've found your problem.

Cathey Apprentice

I was told after diagnosis to cut out milk for 3-4 weeks, I used carnation flavored liquid in my coffee and no other milk. After 6 weeks I had a grilled cheese sandwich and cheese cake, OMG the pain... Even now 3 months gluten-free, I only have milk in my coffee. When I do have cheese it's in moderation. Last night late I made Nacho's and oh how I suffered today. I do use feta or goat cheese occasionally and as little as possible.

As a newbie I found the milk and milk solids bother me the most. Give it time, all goods things come in time. Oh how I would kill for a glass of milk with oreo's. Good luck.

Cathey

saintmaybe Collaborator

Thanks that makes me feel better, I am just overwhelmed at where to start because I guess it could be anything?

I also just read an article saying strong probiotic in combination with digestive enzymes might help?

Anyone have any experience with this?

Start simple. My default meal when I'm glutened is rice and plainly cooked meat, usually fish or chicken. Eat something you're pretty sure doesn't bother you and stick to simple for a few days to clear out your system. Then, add back something that you suspect might bother you. Like, add back fruit, or casein, or whatever. The point is to think of your body like a blank canvas, and yourself an artist. You get as close to a blank page as possible, then start simple, and slowly get more complex.

Or, if science metaphors work better for you, you want to eliminate as many confounding variables as possible. That means you should only try to challenge one food type or category at a time. Otherwise, there's no way to tease apart whether it IS the fruit or the casein, for example. And there's certainly no rule that says it can't be more than one thing.

It's slow, and pretty painstaking, but worth it to move past the disability.


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



Celiac.com Sponsor (A8-M):



Celiac Ninja Enthusiast

When I first got off gluten I had hormone imbalances and had to have my hormones balanced by a naturopath. That made my head more balanced. Also, evern when I was preparing my own gluten free foods, I was still adding things that were not safe. Double check you aren't buying things from the bulk aisle, using spices that have any fillers or what-not, and are keeping your diet simple. Simple diets will help your body process things and heal much faster. Like vegetables, fruits and some meats, plus gluten free breads. Mostly your vegis and fruits will heal you. It will take time but be sure to have a gentle regular excersise routine to help your body metabolize what your eating. Excercise also helps digestion and sleep, getting that nasty gas out of your gut gently will help you way more. The intestines may have damage from the gas, there may be scar tissue, do only gently excersises until you are feeling much better, even then take it easy. I tried body building after a month of getting better and that was way to hard on me lol I push it too far, hopefully I can give helpful advice in some area.

Take care, praying for ya.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.