Gluten-Free Newbie

[Suze046]

Hello!

I am on a new journey as a gluten-free girlie.  As I seem to be reading on this forum, many of you are in the same boat and struggling to get answers. To try and cut a long story short, 5 months ago I had what I thought was a really bad IBS flare-up. Pain after eating, cramps, diarrhea, headaches, brain fog, and weight loss.  Blood tests and stool tests for the nasties (including Celiac) all came back negative.  Fast forward to now, I've lost one and a half stone, my relationship with food is tricky, and I'm 3 weeks into a gluten-free diet.  BUT I feel much better since eliminating gluten.  The doctor wants to retest me for Celiac, but as I've not been eating it, I can't do that yet.  I've had my bloods rerun last week, and white blood cells are a little low, but everything else is fine.  Stool test for Crohn's & IBD came back negative, which is good.  Oh, and throw in a side order of the perimenopause just for laughs...hormones and the gut and so linked!

I've been seeing a Kinesiologist who is helping too, he's been helping with hormones, leaky gut, and breaking down fatty foods, which seems to also be a bit of an issue for me.  I tend to avoid processed food, fatty foods, and my alcohol intake is next to none now.

I wanted to jump on here to chat to like-minded people going through the same challenge.  Am I gluten intolerant?  Is it Celiac?  All I know is it's been a struggle!  Who knew there was gluten in some toothpaste?! 🤷‍♀️ Does anyone else find the eating out thing tricky?  I don't like to make a fuss!

So while I am none the wiser medically...I know that I feel better cutting it out. 

[Scott Adams]

Welcome to the gluten-free journey—it sounds like you’ve been through a lot, but it’s great to hear you’re feeling better since cutting out gluten! The struggle to get clear answers can be so frustrating, especially when tests come back negative but your body is clearly reacting. It’s smart to hold off on retesting for celiac until you’ve reintroduced gluten (if you choose to), but in the meantime, listening to how your body responds is key. The overlap with perimenopause and gut issues is no joke—hormones really do throw everything into chaos! It’s awesome that you’re working with a kinesiologist and focusing on whole foods; that’s helped so many of us here too. And yes, eating out is a minefield.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Suze046]

Thanks Scott. Those articles are really interesting. I’m cutting out gluten for 6 weeks but honestly I’m not sure I even want to reintroduce it! I ate at a restaurant for the first time on Wednesday and then Thursday was really uncomfortable and had a few trips to the loo.. wonder if there was some cross contamination 🤷‍♀️ if that’s how my body reacts after not eating it for 3 weeks I’m not sure it’s worth reintroducing it and re testing for celiac! It might have been a coincidence I realise that I’m not going to feel better all of a sudden and my gut is probably still trying to heal. Thanks for your supportive message! 

[Scott Adams]

if you have already learned that Gluten is the cause of your symptoms, of course there is no need to add it back into your diet— your decision could save you a lot of needless suffering.

One thing to consider is that if you do have celiac disease, your first- degree relatives may also need to get screened for it, because, like diabetes the disease is genetic, although many of its triggers seem to be environmental factors.

You may want to consider getting a genetic test for celiac disease, so you can at least warn your relatives if it turns out that you do carry a celiac gene.

[Suze046]

That is helpful thank you I hadn’t thought of that! 

[Wheatwacked]

Hello @Suze046

In the western world 40 to 60 percent are low or deficient in Vitamin D.  Malabsorption from Celiac Disease, avoidance of UV from the sun and seasonal variations can result in low vitamin D.  A simple 25(OH)D test will tell you your status.  Low vitamin D affects immune system, bone health, mental health.  I keep mine around 80 ng/ml (200 nmol/L).

On 8/15/2025 at 5:26 AM, Suze046 said:

breaking down fatty foods,

Choline has many functions in our body.  From the neurotransmitter Acetylcholine to fat digestion.  It is made by our bodies but in insufficient amount.  The major dietary source is from beef and eggs.  The RDA is 500 mg a day.  That would be equivelant to 3 eggs or 10 cups of cooked brocolli a day.  Choline is a significant portion of biliary phospholipids and is a crucial element for bile function.n.  I found taking Phosphatidly Choline capsules helps.  A homocysteine test can be indicative of choline deficiency. 

Could we be overlooking a potential choline crisis in the United Kingdom?

NIH Choline Fact Sheet

Vitamin D Is Not as Toxic as Was Once Thought