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Gluten Free Diet Not Working Help!


bonnarooski

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bonnarooski Newbie

Hello, my boyfriend was recently diagnosed with celiac disease and hes been extremely strict about keeping gluten out of his diet he even washed every dish in his house to make sure there was no gluten on a dirty dish. We have analyzed everything he is eating (most of the stuff he eats come from wegmans where they put a gluten free label on the package and guarantee that it is not cross contaminated) his symptoms were gone for the first few days of the diet but are now coming back and worsening....anyone have any ideas why this could be or are having the same problem?


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psawyer Proficient

Hello, and welcome.

You didn't say what his symptoms were, so I am guessing a bit here.

Lactose intolerance symptoms can be similar to some celiac symptoms. This can be temporary, as lactase, the enzyme to digest lactose, is produced in the villi. When the villi heal, lactase is again produced, but it may be useful to avoid most dairy products for the first few months.

The amount of damage to the body varies from person to person, and so does the time to heal and recover. During the early parts of the process, it can be like a roller coaster, with extreme ups and downs.

Gfresh404 Enthusiast

My guess is that he is having issues with other foods. I would start out by cutting out dairy, soy, and corn. When I initially went gluten free I felt amazing then I had some setbacks. I have found that for some reason corn bothers me. A lot of people have sensitivities. When going gluten-free you expose yourself to a lot of foods that you did not normally eat before, so you might have a sensitivity or intolerance that you're unaware of.

curlyfries Contributor

Is he eating gluten-free breads of any kind? Often the fragile digestive system can't handle it at first. He may need to eliminate those until he has had some time to heal.

ravenwoodglass Mentor

Another thought in addition to the great advice already given. You say he is your BF, to me that means you at least kiss. Have you made sure any lip products you use are gluten-free?

bonnarooski Newbie

Thanks everybody!! i have made sure that my lipgloss/makeup is gluten free so i think he is just gunna try to avoid lactose for the time being and maybe avoid soy like some of you have suggested

ANix Newbie

Here is a really good article I found for following a gluten free diet.

Open Original Shared Link

Also, often times people with gluten-intolerance also have dairy intolerance, yeast intolerance or other intolerances. I was wondering why I wasn't getting completely better until I discovered I also had dairy and yeast intolerances. My dairy intolerance is related to the casein in dairy, not the lactose.

Aana


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mushroom Proficient
Here is a really good article I found for following a gluten free diet.

Open Original Shared Link

Also, often times people with gluten-intolerance also have dairy intolerance, yeast intolerance or other intolerances. I was wondering why I wasn't getting completely better until I discovered I also had dairy and yeast intolerances. My dairy intolerance is related to the casein in dairy, not the lactose.

Aana

Hi Aana, and welcome.

That cdhnfsite is a winner for newbies who don't know where to start.

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    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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