Not feeling better on gluten-free diet. Need advice on what to do next

[Aaron275]

Hi,

I could really use some help. There seems to be something seriously wrong here.

I was diagnosed with celiac in mid 2018 and I started the gluten-free diet. Everything seemed to be going OK until I had a gluten exposure in late 2019. I have not felt well ever since then. The offending food item that triggered this was gluten-contaminated peanuts.

Since then I have had a crazy amount of food intolerances. I have reacted to so many different foods including basic things like fruits and vegetables. It has gotten to the point where I eat the same thing every day and I don't want to try anything new in my diet because I'm scared that I'm going to react to it. I have a huge list of foods that I have reacted to which I can post later.

On this website I was told that it was probably leaky gut and I needed to do an elimination diet such as the AIP diet. But the problem is I've reacted to some of the foods that are included in the AIP diet, so I don't want to do that because I'm scared that it's going to make me feel even worse. This always seems to happen - every time I try a different diet, I react to some of the foods that are supposed to be "safe". So I have no idea what's really safe for me and what isn't.

I've had the same problem with the low FODMAP diet. Some of the low FODMAP foods make me feel worse than if I don't eat them, so I find it impossible to figure out what I should or shouldn't be eating.

In addition to the food intolerances, I also have other symptoms like bloating, gas, and fatigue. These symptoms happen consistently, even when I'm not reacting to foods.

Another problem I have is that I can't take any kind of pills or tablets, because they trigger my symptoms for some reason. This means that I can't take any vitamins which I might be deficient in, and also, a doctor recommended me some supplements to help with celiac like digestive enzymes and a few other things, and I can't take those either because they trigger symptoms as well. I've even tried taking these things in liquid form and it still doesn't work.

I can't seem to find a way out of this. What is going on here? I am going to be seeing my doctors in the near future but I could really use any advice you have.

Thanks

[knitty kitty]

Welcome, @Aaron275,

Tell us what foods you're having reactions to and what supplements and stuff did your doctor give you.

Thanks

[Aaron275]

Hi Knitty Kitty,

Here's all the foods I've reacted to:

Canned salmon
Spinach
Bananas
Almond milk (two different brands)
Tomatoes
Black tea
Herbal tea
Blueberries
Soy milk
Lactose-free cheese
Dairy-free cheese
Coconut yoghurt
Artificial sweeteners
Protein bars
Olive oil

And, like I mentioned, I react to anything in a pill or tablet as well.

The last time we spoke you told me to avoid the lactose-free cheese, dairy-free cheese, and soy milk. I can avoid those things, but I'm finding it extremely frustrating having to avoid all of these other things as well for no apparent reason.

Do you know what could cause someone to have this many food intolerances?

The supplements I was told to take were Grape Seed Extract, Quercetin, Digestive Enzymes, and L-Glutamine. I was told these would help to improve gut health. I'm not taking them at the moment.

[RMJ]

Perhaps your doctor can refer you to a registered dietician with experience with celiac to help you with an elimination diet.  To be really thorough foods are introduced more than once to be sure the reaction is truly due to the food and not by chance.  

[GFinDC]

Hi Aaron,

You can do an elimination diet to find out what foods to avoid and also what foods are safe.  Then stick with those safe foods.  It's ok to try the bad foods one at a time after getting better.  Some foods sensitivities are temporary, some are permanent.  Testing them is the way to find out.

You can start by choosing 5 foods that are safe.  Eat only those foods for a couple weeks and you symptoms should resolve,  You should only drink water during this time.  When your symptoms are gone, it's time to add one new food into your diet.  If the new foods works keep it.  If not ditch it for 6 months.  The key to an elimination diet is to add back foods slowly, and one at a time.

[knitty kitty]

@Aaron275,

Those foods on your list are high histamine foods.  Look into a low histamine Paleo diet.  Skip the dairy and facsimile dairy foods for now.  Remove nightshades (tomatoes, potatoes, peppers and eggplants).  Don't eat processed foods or restaurant foods.  Eat stuff made from natural ingredients like meat and veggies.  

The supplements you've listed, aside from the digestive enzymes, are not going to benefit you as much as a B Complex vitamin supplement and a magnesium citrate supplement.  

Tryptophan, a form of Vitamin B3 Niacin, has been shown to promote intestinal healing.  

An amino acid, L-Theanine, will also help with healing and calming inflammation. 

My favorite book "The Paleo Approach" by Dr. Sarah Ballantyne, a Celiac herself, offers excellent information about the low histamine AIP diet and nutritional information.  

 

[Aaron275]

I forgot to mention, I have also reacted to a type of soda that had "sulphites" listed as an allergen. But I know I shouldn't be drinking soda anyway.

[Aaron275]

Thanks for the responses, I will look into all of this.

[Olchik]

Sorry you are going through this.:( I’ve myself just started to get back to normal (step by step increasing amount of ingredients) eating. Took almost 6 months. Had the same fear to try anything new with having a couple of normal weeks after months of nightmare. I’m diagnosed for about 8 years, but with all the gluten free diet I at some point found out that I’d feel foggy, sleepy, existed, sometimes with low level constant abdominal pain. 
I had to eliminate eggs couple years ago, as it appeared I’ve started to react on them . My low grade constant pain pain stopped. 
about 6 months ago it was suggested that I either developed IBS or leaky gut because of stress. It was advised also to try Low Fodmap, which i early helped to the level that I didn’t want to ran anything besides only 5 ingredients. I do introduce some food but much slower than it’s recommended. 
From your list( if you are trying low fodmap): banana, especially if they are not green, have fructants and are not low fodmap. Personally I can eat a couple of green bananas now , but no other fruits. Berries are usually safe. Protein bars especially with nuts can be pretty high fodmap. I had reaction on coconut I ice cream and yogurt :(. 
I don’t have allergies on milk products, therefore all lactose free milk/kefir options  going nicely. Also, sometimes it’s not recommended to eat too much of yogurt in case of abominal pain,  as there might be a bacterial overgrowth that can be also an additional player. High histamine profit s as was mentioned before may make influence as well. I honestly at some point limited myself to chicken, olive oil or a piece of butter ( could not digest too much  fat) rice/quinoa/ buckwheat, blueberries, cucumber , and water for the drink, lactose free milk and half of green banana a day. Worked on eliminating stress (haha). Getting back to normal life, but still many vegetables are big no-no. Check all your medications with pharmacy  or call the manufacturer ( even if your physician tells you no one adds gluten into medications) - saved me multiple times. Sorry for the long read And good luck!

[trents]

Have you been checked  for SIBO?

[Scott Adams]

This article may be helpful:

 

[Aaron275]

12 hours ago, trents said:

Have you been checked  for SIBO?

Not yet. I suspect that I might have it. I mentioned this to my GP doctor, and she told me that she can't test for it and that I need to see my gastroenterologist to be tested for it. This will take a long time due to waiting lists.

I know there is a breath test available for SIBO. I don't see why I couldn't do that with my regular doctor. Maybe I should go back to her and bring this up?

[lanlanonearth]

On 4/24/2021 at 8:37 AM, Aaron275 said:

Hi,

I could really use some help. There seems to be something seriously wrong here.

I was diagnosed with celiac in mid 2018 and I started the gluten-free diet. Everything seemed to be going OK until I had a gluten exposure in late 2019. I have not felt well ever since then. The offending food item that triggered this was gluten-contaminated peanuts.

Since then I have had a crazy amount of food intolerances. I have reacted to so many different foods including basic things like fruits and vegetables. It has gotten to the point where I eat the same thing every day and I don't want to try anything new in my diet because I'm scared that I'm going to react to it. I have a huge list of foods that I have reacted to which I can post later.

On this website I was told that it was probably leaky gut and I needed to do an elimination diet such as the AIP diet. But the problem is I've reacted to some of the foods that are included in the AIP diet, so I don't want to do that because I'm scared that it's going to make me feel even worse. This always seems to happen - every time I try a different diet, I react to some of the foods that are supposed to be "safe". So I have no idea what's really safe for me and what isn't.

I've had the same problem with the low FODMAP diet. Some of the low FODMAP foods make me feel worse than if I don't eat them, so I find it impossible to figure out what I should or shouldn't be eating.

In addition to the food intolerances, I also have other symptoms like bloating, gas, and fatigue. These symptoms happen consistently, even when I'm not reacting to foods.

Another problem I have is that I can't take any kind of pills or tablets, because they trigger my symptoms for some reason. This means that I can't take any vitamins which I might be deficient in, and also, a doctor recommended me some supplements to help with celiac like digestive enzymes and a few other things, and I can't take those either because they trigger symptoms as well. I've even tried taking these things in liquid form and it still doesn't work.

I can't seem to find a way out of this. What is going on here? I am going to be seeing my doctors in the near future but I could really use any advice you have.

Thanks

I am just recently looking into Dr. Gundry's diet and his book "Plant Paradox" that talks about lectins being the culprit of leaky gut. I don't have any conclusion yet, but you may want to look into it for yourself.

[Scott Adams]

Good point, we've also done an article on lectins:

 

[ViolaRose]

It happens to me a lot. My villi are flat, and processing food is hard. Adding any new food is a struggle and I have to add it as a liquid first. I eat all solids with soup. Sometimes I have to go completely on liquids for 24-72 to rest my intestine. It's so hard because your body sees gut pain as hunger so you're STARVING the whole time. But after you feel better and can eat again. 

[Scott Adams]

Welcome to the forum @ViolaRose. Are you on a gluten-free diet due to a celiac disease diagnosis?

[Joanie1]

Hi, Aaron!  Your situation sounds much like my current situation.  I was diagnosed celiac by biopsy in Dec 2020, having had a few months of vomiting and poor appetite.  Also diagnosed with moderate gastritis and  esophagitis but other conditions such as lymphoma, gall bladder and h pylori were ruled out. I received the usual “Don’t eat gluten” advice only so I read books and as many articles as I could find.   This website has been incredibly helpful.    I immediately started going gluten-free as much as I could and learned a few things by trial and error.   I live alone and prepare my own meals.

However, I have been consistently vomiting daily since then and have lost 35 additional pounds.  My gastro no longer has interest in my case and he and my internist suggested I travel quite a long way to see a celiac specialist, as there do not appear to be any ones in my city (which actually has good and varied medical practices).  I am unable to travel alone for that distance but made an appointment through a friend’s recommendation to a new, young gastro in my city whose practice with 4 doctors is  also connected with a gastro research institute.

This gastro thoroughly read my test records prior to the appointment and also asked lots of questions.  I was already impressed as my old gastro really never asked questions and just told me to “be patient.”   I also had to initiate any appointments.

The more we discussed, she mentioned that my current problems may not be directly celiac related, as I am extremely careful and still have many digestive issues. I did have much fatigue and neuropathy issues but they are definitely better now.  I told her I vomit anything frequently and have a tough time figuring out what to eliminate.  I can eliminate water if my stomach is full.  Frequently I vomit 2-3 minutes  after eating a small amount of a meat, vegetable, or other unprocessed food, only to try it again 15 mins after the episode and it stays down with no ill effects.

We also discussed a nasty virus I had picked up in Feb 2020 (on a cruise ship) which could have triggered the celiac gene and also a stomach infection. I also never felt like I had shaken the virus.

I am having a gastric emptying study and also celiac panels and antibody testing to see what gluten remains in my body.  I may have a form of gastroparesis, which would explain the immediate feelings of fullness and vomiting after getting a few bites down.

I will not have answers until after my gastro study in June but wanted to share my experiences, as they sound somewhat similar to yours.  Pretty hard to figure out what food to eliminate when anything comes back up but after the stomach is empty I can eat them with no additional consequences.  

I wish you luck in your search for answers.  And I am trying to be hopeful that my daily upsets may cease at some point!

 

 

 

[Scott Adams]

Welcome to the forum @Joanie1! Wow, Feb 2020 for the bad cruise ship virus. Any chance it was covid-19? I ask because this article just went live on our site today:

 

[ViolaRose]

On 5/13/2021 at 2:40 AM, Scott Adams said:

Welcome to the forum @ViolaRose. Are you on a gluten-free diet due to a celiac disease diagnosis?

Yes. Wouldn't it be weird if I just didn't know where I was, and was weirdly commenting on a celiac forum? 😂

[Scott Adams]

Yes, but stranger things have happened here! 😀