Experience with gluten/dairy free diets as a way to stop digestive issues

[MomN]

A year ago, my doctor prescribed me NSAIDs for muscle pain.  Twenty days in, my stomach felt awful and my acid reflux continues to this day.  I've been scoped and had a stomach ultrasound, and everything is fine, but I can't seem to kick the reflux.  My primary doctor said I'm probably gluten and dairy intolerant.  I'm not sure I understand how this relates to taking Aleve. ????  But I did do a scan and found I had a food intolerance to gluten, dairy, and a ton of other things (including apples and cherries????).  Anyways, I am new at this food intolerance thing and am looking for others with similar experiences whose food intolerances came out of nowhere and/or those who might experience similar symptoms (mainly acid reflux, stomach pain, gas, bloating).  I do think diet is a huge factor.  I tried the whole 30 diet for about 2 weeks and all my symptoms went away.  The problem is I can't stick to it. 

I'm struggling to even stick to a gluten/dairy free diet to actually see if it helps.  I usually am good for about 2-3 weeks and then a headache or brain fog makes me want to eat something I shouldn't.  I don't have a bad diet (mostly), but I find it so challenging to stay away from gluten and dairy permanently. Would love to hear others' stories!  Thank you!

Laura

[Ellie]

You know, if you have been diagnosed as having food intolerance issues, it's something you have to decide to do and you have to stick with it, regardless of what other people have experienced. Dairy and gluten issues are nothing to ignore, and I don't think there's any other way to deal with them except to eliminate them from your diet. If you know you have a pattern, then plan ahead with something you *can* eat, and eat that instead of the foods which hurt you.

I cannot tolerate dairy on a regular basis, e.g., only once or twice a week. It causes inflammation, which I notice because my hands ache. I did an elimination diet--30 days without dairy, grains, nuts and legumes, nightshades, and eggs. Happily for me, I only reacted to the dairy (which I suspected).

[gardenmom5]

have you been tested for thyroid?  that can cause inadequate stomach acid (yes, you can get heartburn with inadequate stomach acid.  i know it's counter-intuitive.  I've had times drinking water with lemon juice would get rid of the heartburn.)

I also had reduction in heartburn by cutting out sugar/carbs. (carbs turn into sugar) as sugar increases acid levels in the body.  (1/4 tsp baking soda in warm water at least two hours after eating can calm it.)

[MomN]

I have not been tested. Will look into it. 

I definitely think the sugar/carbs could be playing a factor. Will try your suggestions gardenmom5. Thank you so much!!!

[Ellie]

54 minutes ago, MomN said:

I have not been tested. Will look into it.

Oh, you said you had a scan that indicated your intolerances.

[klmama]

To help with the digestive issues, you might try taking digestive enzymes with meals and snacks.  A general one from the health food store (from Enzymedica, etc.) may help.  There are also some enzymes that are specifically for helping people better digest gluten and dairy, or at least to better digest the trace amounts that are in just about everything.  You'd have to do some research.  

[Carol in Cal.]

My brother decided to try a diet like that, and although he didn't think he had sensitivities, his seasonal allergies disappeared, and he feels much better stomach wise and he stopped getting cracked knuckles every winter.  He is amazed.  He based his changes on The Perfect Health Diet.  He thinks that without realizing it he had had low level allergies, and the annual ragweed lifted them over a threshold to make him symptomatic; that he is still allergic to ragweed and such but no longer has the low level constant allergicness running in the background.

[Rosie_0801]

Often the problem is the quality of the food, but we don't all have access to organic grain/dairy bred for nutrition and grown by regenerative farmers and soaked/sprouted/fermented/whatevered the way those ingredients should properly be consumed. Okay, probably none of us do.

When you think about it that way, it's easier to avoid your triggers. It's not so hard to eat rice instead of ordinary wheat (though often people with wheat sensitivities are fine with durum wheat, spelt and kamut, so maybe test that out) but it is a bit pricier to replace the fat from dairy with another source.

[kristin0713]

I think that my almost 15yo DD has the same problem as you. She was on a LOT of ibuprofen in the past for PANS. She really struggles with stomach pain, despite having done rounds of reflux medicine. I was wondering if a Whole 30 diet would help her. I have no advice because it really is so hard to cut out dairy and gluten. Especially when my family is as picky as they are and I’m already trying to make everyone happy with meals. Please update if you find something that works! 

[Bensmom]

((((MomN))))

My son and I both have gluten and dairy intolerance (and choose to be vegetarian) and deal with it by not having those foods in the house. I have some regular pasta for dh but we don’t keep snacks etc with gluten in the house. If you are struggling with eating things you should not, I recommend removing it from  the house. If you have family members who want certain items you cannot have, give them a box or basket in the pantry with their special items. Having it visibly separated from your food is your reminder that the contents are not for you. 

Cheese was the hardest thing for me to give up. When we had cheese in the house, I could literally stand in front of the fridge and argue with myself. Did I want the cheese or did I want to be healthy and pain-free. I now have several recipes for cheese sauce that we love and we use Follow Your Heart “cheese” on occasion.  There is never dairy in my home now. 
 
Why is it so important to not “cheat” and eat foods your body cannot tolerate?  A few years ago, my son developed several severe nutritional deficiencies and had stopped growing. The doctor explained that when you eat foods your body cannot tolerate, your intestinal lining becomes damaged. Some of the foods caused immediate pain but others were more silent in the damage they were creating.  Even foods that did not create immediate discomfort and have my son racing to the bathroom were dangerous. When the gut is damaged, it can not properly absorb all the nutrients from food (or supplements) your body needs. This leads to feeling tired and low energy all the time and a host of other problems that are exacerbated with time. 
 

I know the transition in diet is hard, but you can do it and your body will thank you. It takes time for the guy to heal, but when you have completely eliminated everything that is toxic to your body, you will start to feel much better!

 

[Plateau Mama]

GF/Dairy free is hard to start but trust me, if you do it for a couple of months is becomes a lot easier.  My biggest piece of advice is do not try to substitute things, find new favorite things.  The substitutions are always lacking compared to the real thing and then all I want is the real thing.  After a couple of months you dont even think about it, but those first few months are hard.  

Even if I don't think I am feeling bad I feel so much better if I stick to my diet and I realize how bad I actually felt. (I have a lot of things beyond gluten/dairy.)

Edited February 10, 2021 by Plateau Mama

[Monica_in_Switzerland]

How were you diagnosed with gluten/dairy intolerance?  And what do you mean by scan?  If you are not absolutely sure of the accuracy of those results, it is going to be very hard to stick to a special diet.  If you don't feel the tests you've had are really definitive, you might want to see a gastroenterologist to run more robust tests and give you r firm diagnosis.  Apples and cherries make me think oral allergy syndrome, but gluten and dairy are a big deal for us culturally, and it takes great will-power to eliminate them without solid evidence that it is necessary.  

I've got two kids with celiac disease.  They don't have any choice, if they eat gluten, they get very sick.  That makes our situation much easier than yours, since your symptoms are vague and only somewhat relieved with diet changes.  

I agree with others above that you need to have a LOT of good food on hand.  Both healthy and junky!!!  Don't bother with substitutes for a month or two, and then only substitutes that have nice strong flavors, like chocolate cake.  It needs to be super-easy to reach for a gluten free treat that you like when, surprise, someone brings over donuts for the whole family.  

My mom is in your shoes.  She feels better on a GF/DF diet, but she doesn't feel perfect.  So she occasionally sneaks a bite of this or that.  Which means her gut is never truly healing, never truly not inflamed.  It makes it impossible to establish a new baseline.  

[ktgrok]

When you were scoped, was it just stomach, or did they do biopsies of intestines? Have you been tested for H. Pylori?

[wintermom]

Had you been on NSAIDs for 20 straight days? Were you also prescribed something to protect the stomach lining, as NSAIDs are hard on the stomach. 

[City Mouse]

My DS is gluten and lactose intolerant. For him, giving up the offending foods was not that hard as soon as he realized that was what was causing his distress. The hard part was finding alternatives to the foods that made him sick, but now that he can get GF chicken nuggets, pizza, Taco Bell, etc, he does fine. However, he can tolerate cheese in moderation which makes things easier, and I go out of my way to make sure he has GF treats. The new GF Oreos are great.

[MomN]

I really appreciate all the responses!  I had a scan that looks for food sensitivities only. I am looking for the link but can't find it - they took samples of my saliva and hair.  Sea sider too, I think you are right about the foods being bad for me because my body is inflamed and if I can get it feeling better, I can tolerate them better.  

I did get tested for H Pylori (negative) and the scope was of the stomach, with a follow-up stomach ultrasound.  Dr said, "eat whatever you want.  Everything looks good."  That was over a year ago.  I have seen my primary dr various times, but I don't feel most take me very seriously.  I have moments where my stress is down and I'm eating good, and I have felt better.  But I am not feeling good lately.  

I will start the elimination diet, as I think this is the only way to figure it all out.  Last time I did it 17 days, and my symptoms were gone by day 14.

Thank you so much!  I know no one with food sensitivities around me, so this has been very helpful just to remember that I'm not making this up and that some of us really do have pain from eating certain foods.  

Laura

[MomN]

2 hours ago, Monica_in_Switzerland said:

How were you diagnosed with gluten/dairy intolerance?  And what do you mean by scan?  If you are not absolutely sure of the accuracy of those results, it is going to be very hard to stick to a special diet.  

Yes, this is so true for me.  I can't find the link to the test I took, but my primary dr suggested it as a way of saving money.  It took saliva and hair samples.  

[MomN]

3 hours ago, kristin0713 said:

I think that my almost 15yo DD has the same problem as you. She was on a LOT of ibuprofen in the past for PANS. She really struggles with stomach pain, despite having done rounds of reflux medicine. I was wondering if a Whole 30 diet would help her. I have no advice because it really is so hard to cut out dairy and gluten. Especially when my family is as picky as they are and I’m already trying to make everyone happy with meals. Please update if you find something that works! 

It sounds like the exact same situation.  I'll update you if the whole30 works for me. 

[MomN]

Found it! This was the scan - https://creatingbalancedhealth.com/product/sensitivityscan/

[Monica_in_Switzerland]

4 minutes ago, Seasider too said:

Gotta be honest, I personally believe blood tests, even stool tests, and especially an elimination diet will give you better info. Unless someone else here has experience with this particular test and can offer validation for it. 
 

Also, echoing ktgrok’s suggestion of h pylori testing, good to know you’ve ruled that out. 

I have to agree.  I poked around the site a bit... I see no science there.  No studies, no nothing.  You need a gluten antibody blood test, as well as a food allergy blood test.  In my personal opinion, you also need a better doctor.  

It is possible to have a negative scope and still be bothered by gluten.  Non-celiac gluten sensitivity is a recently-legitimized diagnosis, but it is not a wishy-washy diagnosis.  You get diagnosed either with positive blood test (but negative scope) or when every other reasonable explanation has been ruled out and you get symptom relief on a GF diet.  

Many of us in the nebulous world of food intolerance have had to do the research and self experimentation (or kid experimentation) while waiting for doctors and science to catch up.  It is an extremely sucky process.  You have to just get yourself out a calendar, give yourself a big old star each day as you complete yet another day of boring, repetitive elimination diet, reward yourself with things like 100% fruit popsicles, a new book, a new movie...  I know it's not fun and you have all my sympathy.  Set yourself a three month goal of elimination and reintroduction, and STICK TO IT!!!  Figure out your strategy for holidays, guests, and invitations.  Have a plan.  You can't wing it until you KNOW FOR SURE that the diet is making a huge improvement in your pain and discomfort.  

[kbutton]

3 hours ago, Plateau Mama said:

My biggest piece of advice is do not try to substitute things, find new favorite things.  The substitutions are always lacking compared to the real thing and then all I want is the real thing.  After a couple of months you dont even think about it, but those first few months are hard.  

Even if I don't think I am feeling bad I feel so much better if I stick to my diet and I realize how bad I actually felt. (I have a lot of things beyond gluten/dairy.)

I agree. I don't have dairy issues but I do have gluten issues and some other stuff (probably a problem with high histamine foods). My allergist has not yet found a cause.

I also highly recommend a probiotic called s. boullardii. I have used other probiotics that were helpful, but this one has been amazing.

I'll add another vote for keeping carbs low. 

[Spryte]

I spent years and years in denial about being GF.  I’d sort of somewhat be GF, cheat when we had guests, and just was not really convinced about the whole thing. I spent a long time unhealthy for that attitude.

My suggestion would be to do a real, hardcore elimination diet for a lengthy time and then add back either gluten or dairy in large amounts.  This is what our board certified allergist has us do.  Large, copious amounts.  And see what happens.  After a few weeks, add in the other item.

I get very sick from gluten, so it has lost all appeal.  I eat dairy, but have two kids who are allergic so I do a lot of dairy free, too.  One kid is anaphylactic, the other gets terribly ill.  So almost dairy free here.  It’s unappealing to eat a food when you know 100% that it makes you sick.  It honestly sounds like you are not convinced that you are unable to eat those foods and be healthy.  Like, maybe you think it might be the case, but you’re not 100% on board.

If I may also suggest an allergist, or another doc, too... I would highly suggest that.  I’m skeptical of the “scan” you’re referencing, and it sounds like you might be as well.

Edited February 10, 2021 by Spryte

[MomN]

I will definitely do the elimination diet.  I can also be better prepared this time for sure.  It's relieving to hear that others had to sort of figure things out for themselves as well.  And it helps to feel like I have a plan moving forward.  Thank you!  I will look into all the suggestions as well like probiotics and such.  

[MomN]

5 hours ago, Seasider too said:

It is challenging to feed yourself different foods than you feed the rest of the family.

So hard for me!

[MomN]

5 hours ago, Seasider too said:

JJ Virgin wrote a book years ago called The Virgin Diet. It’s an oldie but a goodie for coaching one through an elimination diet. And I’m sure there are copious resources on the web. 

Hopefully I can find this at my library.

[MomN]

6 hours ago, Seasider too said:

I am guessing your scope was an endoscopy - a look at the upper gi? IME what they are looking for there is damage like one would see in a celiac patient - damaged lining in the intestinal tract. I’m sure our celiac boardies can tell you more about that. 
 

I was scoped about a year and a half ago to rule out celiac, and got a clear report that I am not. However, my doctor said that I obviously have a non-celiac gluten intolerance, and to not eat the things that make me feel bad. It is also recommended that I stay on a lower carb diet - I do believe that too many carbs contribute to my issues. Specifically for reflux, I avoid eating past about 7pm, and limiting coffee intake. Basically, figuring out what foods disagree with our (admit it, aging) bodies. 

Yes, it was an endoscopy.  I do think carbs contribute to my issues as well.  I'll try the no food past 7.

[MomN]

8 hours ago, wintermom said:

Had you been on NSAIDs for 20 straight days? Were you also prescribed something to protect the stomach lining, as NSAIDs are hard on the stomach. 

No, I was not prescribed anything while taking these.  I initially took them for 14 days, and doctor said to keep going.  I know this was the trigger to my issues - just not sure how they all connect together.

[ktgrok]

10 hours ago, MomN said:

I really appreciate all the responses!  I had a scan that looks for food sensitivities only. I am looking for the link but can't find it - they took samples of my saliva and hair.  Sea sider too, I think you are right about the foods being bad for me because my body is inflamed and if I can get it feeling better, I can tolerate them better.  

I did get tested for H Pylori (negative) and the scope was of the stomach, with a follow-up stomach ultrasound. 

Laura

If they didn't do biopsies of your intestine, and in particular places at that, then they didn't rule out celiac. 

[Harriet Vane]

I have had a similar journey. In my case, my digestive system was wrecked by an abdominal infection with sepsis followed by six months on heavy-duty antibiotics. However, I think part of issues actually started before that infection in a small way.

I was eventually diagnosed with non-celiac gluten sensitivity (made really obvious by the lab tests), lactose intolerance, and we're exploring SIBO and leaky gut. So now I am on a super-restrictive diet to eliminate gluten and dairy, eliminate some other food sensitivities, eliminate some things just because they are hard to digest with the hope is that rest will aid healing, AND I am taking a cocktail of probiotics and supplements to promote intestinal healing. The final component is to be strictly low sugar, low carb, specifically avoiding fructose as the lab tests show I do not process it well. After a few months on this protocol, the idea is that I will be able to add some things back into my diet, but will always be gluten free and lactose free as well as low fructose.

First, I think you need a general stool analysis and also a Wheat Zoomer test. In addition to blood and saliva, stool tests provide a ton of specific information about food sensitivities and digestion.

Second, I think you need to go 100% with a diet to help. In your situation, I would meet with a nutritionist AFTER you do the stool tests and have a super-specific idea of what is and is not an issue for you. No matter what diet you choose, though, I can almost guarantee that a low-sugar approach will almost certainly help.

Third, consider supplements. I take take ginger, probiotics, fish oil, collagen, and I drink bone broth. I also try to include sauerkraut and other probiotic-rich foods in what I eat.

Fourth, with acid reflux on the table, consider not drinking coffee. It's so acidic.

I hope my experience helps you.

[MomN]

16 hours ago, Harriet Vane said:

I have had a similar journey. In my case, my digestive system was wrecked by an abdominal infection with sepsis followed by six months on heavy-duty antibiotics. However, I think part of issues actually started before that infection in a small way.

I was eventually diagnosed with non-celiac gluten sensitivity (made really obvious by the lab tests), lactose intolerance, and we're exploring SIBO and leaky gut. So now I am on a super-restrictive diet to eliminate gluten and dairy, eliminate some other food sensitivities, eliminate some things just because they are hard to digest with the hope is that rest will aid healing, AND I am taking a cocktail of probiotics and supplements to promote intestinal healing. The final component is to be strictly low sugar, low carb, specifically avoiding fructose as the lab tests show I do not process it well. After a few months on this protocol, the idea is that I will be able to add some things back into my diet, but will always be gluten free and lactose free as well as low fructose.

First, I think you need a general stool analysis and also a Wheat Zoomer test. In addition to blood and saliva, stool tests provide a ton of specific information about food sensitivities and digestion.

Second, I think you need to go 100% with a diet to help. In your situation, I would meet with a nutritionist AFTER you do the stool tests and have a super-specific idea of what is and is not an issue for you. No matter what diet you choose, though, I can almost guarantee that a low-sugar approach will almost certainly help.

Third, consider supplements. I take take ginger, probiotics, fish oil, collagen, and I drink bone broth. I also try to include sauerkraut and other probiotic-rich foods in what I eat.

Fourth, with acid reflux on the table, consider not drinking coffee. It's so acidic.

I hope my experience helps you.

Thank you Harriet!  I really appreciate you sharing your experience and wisdom!

[MomN]

Just wanted to give an update.  I started the elimination diet 2 days after this post, so I'm on day 12ish.  The first week I noticed that coconut and almond milk were causing stomach pain, along with other sources of fat.  So I stopped those, along with all coffee and meat.  I'd say my reflux is 75% better at this point.  I'm thrilled.  I need to exercise, but I'm hoping to start as the weather turns.  I also want to look at supplements like those that were mentioned in this post.  I saw this as a possible option:

https://enzymedica.com/products/digest-gold-enzymes-digestive-enzyme?variant=1125337536

I'm planning to stay on the diet until that 75% gets closer to 100%.  I also made an appointment with a gastroenterologist, although now I'm not sure I need one.  Just wanted to thank everyone who commented and gave their own experiences - they were just the motivation I needed to start!

I'm also monitoring my sinus headaches to see if those get better with the diet.  Fingers crossed!

[Corraleno]

Great update!

 

[lewelma]

On 2/11/2021 at 5:03 AM, Seasider too said:

It is challenging to feed yourself different foods than you feed the rest of the family. 

I am gluten and dairy intolerant.  I cook and store wild rice and masa tortillas in the freezer. I cook and refrigerate both roasted potatoes and masa cakes in the refrigerator. I simply remove the sauce before it it mixed with wheat and cheeses. So for lasagna, I remove a scoop of the meat sauce and eat it over wild rice.  For tortilla rollups, I simply use my frozen masa tortillas rather than the family's wheat ones. Basically, I have 4 different forms of starch prepared and just substitute it in. We also do a lot of meals with potatoes, rice, and rice noodles so I can join in without adjustment.

For dairy, I have almond-coconut milk in my tea, and avacado rather than cheese for the greasy topping. I also use a drizzle of olive oil. I don't do fake dairy or lactaid dairy. I just don't like it.