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grannykathy

Don't know if I'm Gluten Intolerant or not

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So I have been diagnosed with Microscopic Colitis.  My GI did blood test for Celiac but said it was negative.  Told me I could eat whatever, just take my Budesonide.  The microscopiccolitis.org website tells me that almost everyone who has MC is gluten intolerant and probably dairy intolerant so I have been on gluten free; dairy free diet for 11 days.  My symptoms have not improved.  They tell me I should do the Enterolab testing.  Its over 500 do all of it.  I am broke from buying budesonide.  Can't afford that.  Any thoughts.  Should 11 days on this diet have made at least a little difference by now.  My budesonide worked well in the beginning but seems to have stopped working now.  Don't know what to do next.  

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18 minutes ago, grannykathy said:

So I have been diagnosed with Microscopic Colitis.  My GI did blood test for Celiac but said it was negative.  Told me I could eat whatever, just take my Budesonide.  The microscopiccolitis.org website tells me that almost everyone who has MC is gluten intolerant and probably dairy intolerant so I have been on gluten free; dairy free diet for 11 days.  My symptoms have not improved.  They tell me I should do the Enterolab testing.  Its over 500 do all of it.  I am broke from buying budesonide.  Can't afford that.  Any thoughts.  Should 11 days on this diet have made at least a little difference by now.  My budesonide worked well in the beginning but seems to have stopped working now.  Don't know what to do next.  

I would be very careful with any web site that just wants to sell you thier book and recommends places like enterolab.

Try actual medical sites like Mayo clinic

https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/diagnosis-treatment/drc-20351483

 

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They haven't tried to sell me a book - oh well I guess there is a book on the website, but nobody has pushed it.  But yes they are very big on Enterolab.  They have suggested whether I do the testing or not, I should stay off of gluten, dairy, soy, anything with fructose in it and fiber.  That's not leaving me much to eat and  I have lost an additional 7 lbs in 11 days that I didn't have to lose.  5'7" and 112 lbs now.  Just don't think I can keep this up.  Can you tell me, if I am sensitive to gluten, should 11 days gluten free have given me a little improvement?  Or is that just way too short a time to tell?

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The Mayo Clinic does advise a gluten free and dairy free diet for Microscopic Colitis.  It would be worth trying it for a longer period — like months.  I am sure it takes time for the Colitis to resolve.  It takes time to learn the gluten free diet too.  Most celiacs take a few months to a year to heal.  

I hope the diet helps.  I would also ask your doctor for copies of your tests.  See if you got the complete panel.  If my doctor had not ordered the entire celiac panel, my diagnosis would have been missed.  

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Hmmm, well if I should be on a gluten free diet with the M Colitis, then I guess there is no reason to be retested for Celiac.  I mean the treatment is the same right? - a gluten free diet.  Except with the MC I also have to be dairy free?  

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When I have been glutened, I become lactose intolerant again (temporary) and anything I eat hurts to digest.  I usually pull my crockpit out and cook stew meat, chicken or fish.   I eat that (and all the fat), along with some veggies (e.g. green beans) that have been cooked to death.  Plain white rice is a good food for most.  I eat that for a week or more for every meal.  I kid you not. I even have some frozen in case I am too sick to even cook.   As I heal, I add in more veggies like sweet potatoes, potatoes, carrots, turnips, avocados, etc. to my diet or the stew.  I eat plenty of fats (olive oil, eggs fried in lard, etc.).  I am a diabetic and fats have become my friend.  So different from what the government pushed in the 80’s.  

Talk to your doctor about your weight loss.  Perhaps a product like Ensure would help.  You might need another round of drugs too.  

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Posted (edited)
12 minutes ago, grannykathy said:

Hmmm, well if I should be on a gluten free diet with the M Colitis, then I guess there is no reason to be retested for Celiac.  I mean the treatment is the same right? - a gluten free diet.  Except with the MC I also have to be dairy free?  

At this point, I personally would go for whatever it takes to heal from the MC.  A gluten free diet (and gluten free cookies is not a good food choice at the time) certainly can not cause harm.  You might be able to go back to gluten or dairy when the MC has resolved.  If you want to pursue a celiac disease diagnosis, do it later.  I just pointed out that not all celiacs test positive to the standard screening TTG test.  In any case, you should always maintain your own medical records, in my personal opinion.  

Edited by cyclinglady

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Posted (edited)
39 minutes ago, grannykathy said:

They haven't tried to sell me a book - oh well I guess there is a book on the website, but nobody has pushed it.  But yes they are very big on Enterolab.  They have suggested whether I do the testing or not, I should stay off of gluten, dairy, soy, anything with fructose in it and fiber.  That's not leaving me much to eat and  I have lost an additional 7 lbs in 11 days that I didn't have to lose.  5'7" and 112 lbs now.  Just don't think I can keep this up.  Can you tell me, if I am sensitive to gluten, should 11 days gluten free have given me a little improvement?  Or is that just way too short a time to tell?

Those food sensitivity tests on Enterolab are not accepted by actual Celiac doctors.  This sites probably gets a percentage of everyone they send to get the bogus tests.  

 

And I am going to guess that 11 days will not be enough to heal the colitis.  Why not try a restrictive diet for a month or two and see if it helps?  I am surprised that your doctor knew enough to biopsy you for microscopic colitis but didn't advise any diet changes.  Did he say how bad or wide spread it was? 

Edited by kareng

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Please don't waste your money on Enterolab.  They have never submitted any proof for peer review verification.  They are glad to take your cash though.

I am not familiar with the MC diet.  But many celiacs avoid additional foods beyond just gluten.  I don't eat dairy, soy, nightshades, carrots, celery, oats.  Probably a few I am forgetting.  Many others here avoid other foods too.  There is still plenty to eat though.  Meats and veggies, nuts, eggs etc.  There is almond milk and coconut milk in the stores.  What is helpful on starting the gluten-free diet is to avoid all processed foods and stick with whole foods.  Do all your own cooking and don't eat at restaurants for 6 months.  In celiac, even a small crumb can kick off the immune system reaction.  So we have to avoid cross-contamination of foods.  So no shared condiments jars like mayo, peanut butter, etc.  There is a very short list of ingredients on whole foods.

Simplifying your diet is a good thing.  The fewer foods you eat the easier it is to identify a problem food.  Sometimes an elimination diet is helpful to find problem foods.

We have a member ennis-tx who has ulcerative colitis.  Ennis eats a keto/paleo/gluten-free/df diet.  Maybe his experience would be helpful to you.  He also has lots of recipes because he is a chef.

I'll try and point him to this thread.

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I have Ulcerative Colitis, it flares after my celiac to gluten also, and dairy exposures, along with soy, spices, and if I over do it on stuff like onion/garlic. It also in my case hates fructose/glucose, rare but some people have that also as a trigger.

I like you enjoyed a "not so restrictive" diet on my Rx for the disease, I could have spices, garlic, onion, mexican food, without flares....but since  not being able to afford the $600+ a month Rx I found alternative treatments. These will help benefit yours also as the method of coating and soothing the intestinal walls is the same do read here on what I found worked.

Also go on a bland diet, avoid legumes, grains if you can, I found nut meal porridge (high in calories and fats) to be great, starches, carbs, sugars, flared mine (you might be backwards and find with rice porridge but not nuts, we are all a bit different). You can find all kinds of recipes for it. Roasted meats/crock pot meats made super soft and easy to digest like a shredded slow cooker roast/chicken. Baked avocado with eggs inside, Scrambled eggs, I found made extra moist with a bit of almond milk/coconut milk whipped in before cooking and using a microwave omelette maker to prevent the "hard edges". I stew in greens into these like canned spinach to get my greens and have spoons of  nut butters for desserts like almond butter (avoid peanut butter it is a legume). Avocado is also quite gentle on the guts for most people and chock full of healthy fats and calories.

Greens need to be cooked to mush so the tough fibers do not irritate your gut....hate to say it but you should be able to "swish" the food in your mouth before you swallow so eating will take a bit longer.
AS you heal you will be able to eat a bit more like grain free breads, soups, stews, roast, sheet pan meals, stir fry, egg dishes, etc.

If you having issue with diarrhea try a higher potassium diet or taking some, it helps dry out your stools. I found using 2tbsp of coconut flour in my eggs to make them set up added fiber and potassium. I have various grain free flat breads on this base also,

Keep a food diary and find your triggers going to a base super simple diet,
https://www.wikihow.com/Keep-a-Food-Diary


Taking BCAAs or bit of protein powder/protein bars between meals can help with preventing weight loss, I just Julian bakery bars, or protein powders like Jarrow Pumpkin, and my own blends....you can probably get by with blends like I used to from Nutra-key V-pro and MRM Veggie Elite.

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Posted (edited)

Thanks for all the good info guys.  I really appreciate so many responses so quickly.  So heres what I've been eating for the last 11 days: chicken or ground beef - grilled; sweet potatoes baked potatoes or rice with salt only or sometimes butter; green beans or carrots well cooked; rice chex with almond milk; canned peaches in juice; unsweetened applesauce.  Then I recently made chicken bone broth and made soup out of it, adding back in some of the chicken plus green beans, carrots white potatoes and rice.  Haven't been eating eggs because I was told on the other site I could be sensitive to eggs (I really miss them)  No cheese or milk.  That's it - that's what I've eaten for 11 days now.  Please tell me if I need to eliminate any of those items from my diet.  I really need some calories.  

Other info- I started out on 9 mg of Budesonide (very expensive).  It stopped my D quick in a few days, then turned into constipation.  But when I reduced to 6 mg a day the D came back.  I am back on 9 mg a day but this time its not stopping the D.  So that's it - 9 mg a day budesonide and the gluten free; dairy free diet, but still have two episodes every morning of watery D.  Then that's it for the day, but I feel wiped out for rest of day.  0 energy and continuing to lose weight.  

I ordered this today but maybe shouldn't have:

https://www.amazon.com/gp/product/B00BGVNNNI/ref=oh_aui_detailpage_o01_s00?ie=UTF8&th=1

Its Gluten-free; dairy free; soy free and egg free.

 

 

Edited by grannykathy
additional info

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1 hour ago, grannykathy said:

Thanks for all the good info guys.  I really appreciate so many responses so quickly.  So heres what I've been eating for the last 11 days: chicken or ground beef - grilled; sweet potatoes baked potatoes or rice with salt only or sometimes butter; green beans or carrots well cooked; rice chex with almond milk; canned peaches in juice; unsweetened applesauce.  Then I recently made chicken bone broth and made soup out of it, adding back in some of the chicken plus green beans, carrots white potatoes and rice.  Haven't been eating eggs because I was told on the other site I could be sensitive to eggs (I really miss them)  No cheese or milk.  That's it - that's what I've eaten for 11 days now.  Please tell me if I need to eliminate any of those items from my diet.  I really need some calories.  

Other info- I started out on 9 mg of Budesonide (very expensive).  It stopped my D quick in a few days, then turned into constipation.  But when I reduced to 6 mg a day the D came back.  I am back on 9 mg a day but this time its not stopping the D.  So that's it - 9 mg a day budesonide and the gluten free; dairy free diet, but still have two episodes every morning of watery D.  Then that's it for the day, but I feel wiped out for rest of day.  0 energy and continuing to lose weight.  

I ordered this today but maybe shouldn't have:

https://www.amazon.com/gp/product/B00BGVNNNI/ref=oh_aui_detailpage_o01_s00?ie=UTF8&th=1

Its Gluten-free; dairy free; soy free and egg free.

 

 

I would remove the fructose (Fruit) and go easy on the rice and potatoes. Seems you tried the low fat side of it as some people can not handle much fat, might try the low carb approach and see if you get improvements. You can get more calories in with stuff like almond butter, sun butter, walnut butter, avocados anyway. Try rotating to a lower carb higher fat diet, you might be like me and have sugars flaring it. Again avoid gluten, dairy, soy, peanuts, and anything that might ferment or turn to sugar.  Heck might try a hardboiled egg.

If you need I have a skillet flat bread recipe that uses coconut flour that could perhaps add some bulk to the stool and dry it out.

That Phood stuff, has a blend of many different things in it, but you can try it. I would suggest nut butters,seed butters, Julian Bakery Pegan bars, between meals or  sipping on a shake of Pioneer labs Celiac Meal, Nutra Key V-pro, Or  MRM Veggie Elite. To help keep muscle weight on. BUT NOTE, sometimes when the gut is rushing like that these protein powders can make you gassy and flush your GI tract.

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Well I really wasn't doing low fat on purpose.  Just grilling the meat because its easy.  I was actually told on the MC site that I need animal fat and should eat it.  I looked up that Celiac Meal Shake and it was like $80 on Amazon.  Didn't look up the other 2 yet.  And the Pegan bar looked like it had way too much fiber.  Shouldn't I be avoiding fiber?  I did order some Almond Butter.  I've never even tasted it but will to give it a try if it will give me some calories.  So you are from Ennis?  I have family in Kemp and in Seven Points.

Oh correction, I did find the Celiac Meal Shake for less on Amazon but it is on back order.  I compared the nutritional information of it with the Phood that I ordered.  The Phood has 7 grams of fiber.  I'm worried it will be too much fiber.  What do you think.  The Celiac Meal only has 1 I think.  But like I said its on back order.

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2 hours ago, grannykathy said:

Well I really wasn't doing low fat on purpose.  Just grilling the meat because its easy.  I was actually told on the MC site that I need animal fat and should eat it.  I looked up that Celiac Meal Shake and it was like $80 on Amazon.  Didn't look up the other 2 yet.  And the Pegan bar looked like it had way too much fiber.  Shouldn't I be avoiding fiber?  I did order some Almond Butter.  I've never even tasted it but will to give it a try if it will give me some calories.  So you are from Ennis?  I have family in Kemp and in Seven Points.

Oh correction, I did find the Celiac Meal Shake for less on Amazon but it is on back order.  I compared the nutritional information of it with the Phood that I ordered.  The Phood has 7 grams of fiber.  I'm worried it will be too much fiber.  What do you think.  The Celiac Meal only has 1 I think.  But like I said its on back order.

Yes, I have a small gluten free bakery in Ennis, do mostly grain free baked goods, and I do local chef work for people, and sometimes help catering with larger events.

The fiber in those bars I found does not bother me...I am odd with this diet in I eat large fiber from select sources with no issues. But fiber from raw veggies, or carbs/sugar will bother me....oddly nuts, seeds, cocoa nibs, konjac, etc do not bother me -_- Well konjac gives way to massive stools but that is another story.

I have not had that shake in about a year, I used to get it $20-$22 from luckyvitamin.....

You might be best off trying that herbal remedy I use for UC the slipper elm pills and marshmallow pills from Natures way. 3-4 each twice a day. I gave links to how they can help with coating and soothing irritated intestines.

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Posted (edited)

Pepto Bismol can also be helpful to soothe the gut.

And thanks ennis_tx for joining in! :)

Edited by GFinDC

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Ordered the marshmallow and slippery elm tonight.  Pepto makes me throw up.  :)  The Celiac Meal Shake is out of stock EVERYWHERE!

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Posted (edited)

My sister sent me this link to an article in Scientific American.   The gist of it is, bacteria that don't get enough fiber can start chomping away on our guts instead. 

https://www.scientificamerican.com/article/fiber-famished-gut-microbes-linked-to-poor-health1/

...

Feed the microbes so they don't feed on you
As gut microbes are starved of fermentable fiber, some do die off. Others, however, are able to switch to another food source in the gut: the mucus lining that helps keep the gut wall intact and free from infection.

In a recent study presented at the Keystone meeting, Eric Martens of the University of Michigan Medical School, postdoctoral researcher Mahesh Desai and their colleagues found that this fuel switch had striking consequences in rodents. A group of mice fed a high-fiber diet had healthy gut lining, but for mice on a fiber-free diet, "the mucus layer becomes dramatically diminished," he explained at the meeting. This shift might sometimes have severe health consequences. Research by a Swedish team, published last year in the journal Gut, showed a link between bacteria penetrating the mucus layer and ulcerative colitis, a painful chronic bowel disease.

....

Seems like it might be helpful information.

Edited by GFinDC

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That was an interesting  article.  Just seems like though that everything is a two edged sword.  On the one hand, fiber is good - on the other it is bad if you are in a flare with MC.  It all seems so confusing.  And every time I think I have a simple diet figured out, I get told to eliminate more foods.  Like my potatoes and sweet potatoes.  They are kind of a staple for me.  Like the only thing I look forward to at meal time that I thought was "ok" for me.  And my canned peaches for breakfast.  In other news, I have in the last several days gone straight from watery D to constipation so I have cut my budesonide down from 9 mg a day to 6mg.  Its weird how there is never any gradual shift from D to constipation or vice versa.  Its one or the other.  I haven't seen anything resembling normal since February. 

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    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

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    • I just saw the ear doctor though and he didn't say anything  
    • I was diagnosed with Celiac in July of 2016. 

      I had an endoscopy in April of this year, the damage seemed to be very minimal (On a scale from 0 to 5, five being the worst and 0 being healthy, I was a 1.) and the doctor told me I'm healing.... If I'm still healing...why do I still hurt SO BAD? It doesn't matter what I eat, rice, rice pasta, fruits, vegetables, I'm always in major pain and I'm always EXTREMELY BLOATED, and I spend all day burping and in burning, uncomfortable pain.

      If I'm healing, why am I still sick? My gut hurts SO BAD and my life is a literal LIVING HELL, i can't even drink water without severe bloating and pain. I've been severely constipated for months now and the laxatives don't really seem to be working. The doctor wants my intestines to heal before he does anything else... so he's going to to do another endoscopy in a year.... I really don't want to wait around an entire YEAR before they do anything else, my gut hurts so bad I haven't even been able to look for a job, every day is a battle to live.

      Any suggestions on how to help this? I'm so sick and tired of living in severe pain.
    • Brandi1969, Carbs/Sugars as they break down ferment turning into gases causing your bloating quoting Ennistx verbatim and I agree! You can try going low CARB aka Keto or try taking some BetaineHCL to stoke up your digestive fires. I will provide some links that list simple home tests and one that provides doctor supervised testing. Bloating is common with Low Stomach acid. See this ChateLaine article. https://www.chatelaine.com/health/diet/bloated-low-stomach-acid-may-be-the-cause/ The easiest way to do this at home though least scientific way is the Baking Soda test to see if you burp from it. See this article that list 5 ways to test your stomach acid levels including medical tests to confirm what the baking soda tests indicates. https://drjockers.com/5-ways-test-stomach-acid-levels/ If you fail the baking soda test the easiest self testing is to try taking some BetaineHCL to see if it helps your bloating.  I suggest 3 or 4 BetaineHCL capsules with a glass or two of water (or tea/juice if you prefer) after you have begun eating.  It should not be soda because soda's will burp on their own from carbonation. 3 or 4 at  meal is not as high you think it might be. .. it tends to be in the goldilocks zone of not being too little . ..but not too much either. See this article about the simple test of using BetaineHCL for low stomach acid. http://hansacenter.com/simple-at-home-test-for-low-stomach-acid/ quoting read the whole article and these other links when you get a chance. . .but I am highlighting the high points. quoting below from the hansacenter "To perform this (baking soda) test: mix one quarter teaspoon of baking soda in eight ounces of cold water, first thing in the morning, before eating or drinking anything except water. Drink the baking soda solution. Time how long it takes to belch. Time up to five minutes. If you have not belched within five minutes stop timing anyway. If your stomach is producing adequate amounts of hydrochloric acid you should probably belch within two to three minutes. Early and repeated belching may be due to excessive stomach acid. Belching results from the acid and baking soda reacting to form carbon dioxide gas. The Heidelberg or Gastrocap tests can be employed for confirmation of the results of this test. I also look for signs and symptoms of low stomach acid. There are many laboratory test indicators of this condition. Some of these include deficiencies of amino acids, minerals, B vitamins, (My words Vitamin D, Magnesium, Iron, B-12 etc.) and, on digestive analysis, elevated levels of putrefactive short chain fatty acids in the stool. I like to have patients (clinician at hanasacenter) do a therapeutic trial with supplemental betaine HCL. (hydrochloric acid) If you take Betaine HCL after a meal and feel nothing, your stomach is probably not producing enough hydrochloric acid. A normal response to taking betaine HCL is a feeling of warmth in the stomach. For an individual whose hydrochloric acid levels are lacking, I have them gradually work up to supplementing as many as 5 Betaine HCL capsules after meals. Although this may sound like a lot, in response to a very big meal, a healthy stomach produces the equivalent of at least 14 betaine HCL capsules. For optimal results, the protein digesting enzyme, pepsin, should be part of the betaine HCL formulation." I hope this is helpful but It is  not medical advice. I used to take BetaineHCL capsules to improve my digestion because my stomach acid was not strong to digest carbs fast enough to keeep them from fermenting into gases causing severe bloating. If this works right you can taper off the BetaineHCL capsules after a few months. Here are two reference works on this topic.  Low stomach acid is known as Hypochloridia and NO stomach acid is known as Achloridia. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/ notice their figure one about how fast the patient felt better after beginning to take BeatineHCL capsules. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/figure/f1-49-53/?report=objectonly Also see this research theorizing why we develop low stomach acid in first place leading to severe bloating if left untreated. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml good luck on your continued journey. ***** Again this is not medical advice but I hope it is helpful. I only know it helped me. As always “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2:7 this included. Posterboy by the grace of God,  
    • Has he had his vitamin and mineral levels checked?  We can be low vitamin D, B's, iron etc.  All those vitamin deficiencies add up to problems with the body healing and maintaining itself.  
    • Ok, I’ll try a probiotic. I already avoid dairy and soy. Hopefully it will help. Thanks!
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