Increasing symptoms after going gluten free

[Tyoung]

Before my diagnosis I would consider myself pretty much asymptomatic other than a few flare ups of what I previously thought were ibs symptoms. After having iron deficiency as well I had a positive blood test and EGD. I have now been gluten free for about a month but my symptoms have gotten worse. I now have bloating, acid reflux, and pain in the upper abdomen on and off most days. I am pretty positive I am not being glutened as we overhauled our whole house to be gluten free and haven’t eaten out since the diagnosis. Has anyone else experienced a worsening of symptoms after going gluten free? Will it subside? Or is there something else I should be concerned about. Thank you! 

[trents]

Welcome to the forum, @Tyoung!

It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now.

There are a couple of possibilities that come to mind.

One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items.

Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements.

Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[ognam]

I had a lot of weird/random symptoms for a few months after going gluten free. But eventually they evened out and I felt SO MUCH BETTER.

The person above wrote a very detailed message that looks helpful. I'd add don't forget to check for gluten in places like medicine. Advil liquigels, for example, have gluten. It's very frustrating trying to figure out if things are gluten free as us law doesn't require it to be declared. The only labeling rule is that if the product says gluten free, it must have less than 20ppm gluten.

[trents]

Although it is true that FDA regulations don't require gluten to be included in allergy info, it does require wheat and ingredients made from wheat to be listed. Of course, that doesn't preclude gluten from barley being found in a product.

[ognam]

16 minutes ago, trents said:

Although it is true that FDA regulations don't require gluten to be included in allergy info, it does require wheat and ingredients made from wheat to be listed. Of course, that doesn't preclude gluten from barley being found in a product.

Yes, lots of delicious things have barley malt. It also doesn't include rye. And there are a number of grains commonly cross contaminated such as oats.

 

Additionally, wheat allergies are different from gluten allergies as wheat allergies are a reaction to a wheat protein. So something *could* contain wheat gluten without causing a wheat allergic response (though realistically,  I don't know how likely that is to occur)

[Pasballard]

I have Celiacs and want you to be aware of the amount of weight you can potentially put on if you rely on gluten free snacks, bread etc.,they  are high in carbs.  I put on 25 lbs in a short amount of time.  Whole Foods are the best way to go but I struggle with this.  The cost of gluten free is also a problem.  I love black licorice but most have gluten.  My favorite chili seasoning as well.  The list is endless.  I take  Advil liquid gels and had no idea until I read this.  I hope you do better than I have done.  I feel I am destined to suffer daily no matter what.  My aunt didn’t take care of herself and died from complications.  I hope you can get on a good routine.

[cristiana]

On 1/5/2025 at 12:45 AM, Tyoung said:

Before my diagnosis I would consider myself pretty much asymptomatic other than a few flare ups of what I previously thought were ibs symptoms. After having iron deficiency as well I had a positive blood test and EGD. I have now been gluten free for about a month but my symptoms have gotten worse. I now have bloating, acid reflux, and pain in the upper abdomen on and off most days. I am pretty positive I am not being glutened as we overhauled our whole house to be gluten free and haven’t eaten out since the diagnosis. Has anyone else experienced a worsening of symptoms after going gluten free? Will it subside? Or is there something else I should be concerned about. Thank you! 

I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet).

Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain.

I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary.

Cristiana

[knitty kitty]

@Pasballard,

Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.  

We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.  

Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.

[Aussie Celiac]

Sometimes celiacs can also have other things like lactose intolerance which is fairly common. Also research fodmap foods, it's quite complicated but there are some other foods which can cause digestive issues. For me it's too many onions and garlic.

[Jo Woodard]

I have been gluten free for 25 years, but had recent skin issues taking over my body (biopsy said it was "psoriasis-like"). I thought I was eating gluten free, but my blood tests came back positive for consumption of gluten.  I examined everything and then my doctor identified the source as "gluten free" oats (even if organic).  She said that there is no way to avoid cross contamination.

So now I am really gluten free since cutting out oats.  My skin is cleared up and my blood work is clean.

[trents]

Welcome to the forum, @Jo Woodard! The problem with oats is not always cross contamination with gluten from other grains. The main protein found in oats is "avenin" and it has a structure similar to the wheat/barley/rye protein "gluten". It is similar enough to cause a gluten-like reaction in some celiacs. About 10% of celiacs cannot tolerate oats.