Maybe Celiacs, but Workouts are better?

[Tarmander]

I generally eat gluten free, but have gluten here and there.  I am a T1D and have had the blood test several times for celiacs and it always came back negative.

Last few days I started eating these biscuits that have gluten in them.  I really like them and ate probably 1000 calories per day as I do a lot of walking. 

Weird thing is, over the last 3 days, I lost 5 pounds off the scale (175 to 170) 3 pounds at first and then 1 pound per day.  Kind of trippy.  I track my calories every day, and have not been in a deficit.  I also have been waking up at 2am and can't fall back asleep. Sometimes I have been on a wheat kick before with waffles or crackers, but normally I get off the gluten train after a week or so from endorphin mental symptoms.

I thought for sure this must be celiac, but in that same time, I have lifted weights, and my workout was way better.  What was usually fatiguing was much easier.

I am going to call my doc today to try and get the blood test asap.  But wanted to check in and see if anyone else experienced something like this.  Maybe these are just super biscuits or something (brand is Olyra).  Don't really have any skin symptoms.  BMs changed with the biscuits, became less often.

Appreciate the comments

[plumbago]

Hello!

I'm guessing you are in the UK as you refer to what we in the US call cookies as biscuits. https://www.celiac.com/uploads/emoticons/default_smile.png

You don't say whether your diabetes is controlled and how your blood sugar is throughout the day. You know doubt know that when BG is extremely high, we start to break down our own body tissues for energy, losing weight in the process.

One of the symptoms of celiac disease is diarrhea. Have you been having D and if so do you think that is accounting for the weight loss?

Good to get checked out - make sure to get the complete panel. There's a strong association between TD1 and celiac disease.

Plumbago

 

[trents]

Sounds like you have been on again off again with gluten free eating. What you need to know is that unless you are eating regular amounts of gluten daily for about 2 months the serum antibody testing for celiac disease may be invalidated. The Mayo Clinic guidelines for a pretest gluten challenge is the consumption of two slices of wheat bread daily (or the equivalent amount of gluten) for 6-8 weeks leading up to the blood draw day. Some physicians neglect to tell their patients this or don't know to tell them. There is still a lot of ignorance in the medical community about gluten-related disorders.

Also, do you know what specific test or test have been done for celiac disease? Many docs will only order the tTG-IGA test. A full celiac panel should be run as 20% of whites and 80% of those of black African decent who actually do have celiac disease will be missed by the tTG-IGA. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There is also the possibility that you don't have celiac disease but NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is not yet a definitive test. celiac disease must first be ruled out.

[Tarmander]

4 minutes ago, plumbago said:

Hello!

I'm guessing you are in the UK as you refer to what we in the US call cookies as biscuits. https://www.celiac.com/uploads/emoticons/default_smile.png

You don't say whether your diabetes is controlled and how your blood sugar is throughout the day. You know doubt know that when BG is extremely high, we start to break down our own body tissues for energy, losing weight in the process.

One of the symptoms of celiac disease is diarrhea. Have you been having D and if so do you think that is accounting for the weight loss?

Good to get checked out - make sure to get the complete panel. There's a strong association between TD1 and celiac disease.

Plumbago

 

Thanks for the response.  Good idea about the ketosis, but diabetes is well controlled.  A1C is 6.3

No diarrhea recently either although it seems like I go from loose stools to hard ones and bounce back and forth.  Haven't thought to compare this to my gluten intake.

[Tarmander]

7 minutes ago, trents said:

Sounds like you have been on again off again with gluten free eating. What you need to know is that unless you are eating regular amounts of gluten daily for about 2 months the serum antibody testing for celiac disease may be invalidated. The Mayo Clinic guidelines for a pretest gluten challenge is the consumption of two slices of wheat bread daily (or the equivalent amount of gluten) for 6-8 weeks leading up to the blood draw day. Some physicians neglect to tell their patients this or don't know to tell them. There is still a lot of ignorance in the medical community about gluten-related disorders.

Also, do you know what specific test or test have been done for celiac disease? Many docs will only order the tTG-IGA test. A full celiac panel should be run as 20% of whites and 80% of those of black African decent who actually do have celiac disease will be missed by the tTG-IGA. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There is also the possibility that you don't have celiac disease but NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is not yet a definitive test. celiac disease must first be ruled out.

Ahh, I didn't know this about the test and how long it takes to build up to get an accurate reading.  I eat gluten off and on, so perhaps it is enough with my last few day binge to show up?  Roll of the dice I guess

I am not sure what tests I got in the past, it has been years.

I really don't think I could eat gluten for 2 months to get an accurate test if these biscuits are really the cause of waking up at 2am.  I am a bit strung out today with the lack of sleep.  I could do small amounts of gluten everyday for a couple months, but not the amounts I have been doing recently.

I think bottom line what I am seeing is that whenever I do high amounts of gluten for a week or two, bad things start to happen, which are confounded by some good things like better exercise tolerance.

[trents]

There is also the option of an endoscopy with biopsy of the small bowel lining. Celiac disease damages the "villi" that line the small bowel and during the endoscopy they take a sample and send it off to a lab for microscopic inspection. That would only require you to be eating the gluten equivalent of two slices of wheat bread daily for two weeks leading up to the procedure. And the biopsy is considered to be the gold standard of celiac diagnosis. If you think gluten is interfering with your sleep, ask the doctor for some Ambien.

Edited September 15, 2022 by trents

[knitty kitty]

On 9/15/2022 at 10:12 AM, Tarmander said:

Thanks for the response.  Good idea about the ketosis, but diabetes is well controlled.  A1C is 6.3.

Diabetics are usually deficient in Thiamine Vitamin B1.  Thiamine is needed to turn carbohydrates, fats and proteins into energy for our bodies.  Increasing the amount of carbohydrates in your diet can cause a dip in your thiamine level.   When our thiamine level gets low, our bodies switch from aerobic energy production to anaerobic energy production, ketosis.  Just like @plumbago said.  Ketosis turns fat into energy, hence the weight loss. 

Unintentional weight loss is an early symptom of Thiamine deficiency.  So is insomnia. And those "endorphin mental symptoms" may be related to Thiamine deficiency as well.  

Here's some articles that provide more information....

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

This article discusses thiamine deficiency induced by high carbohydrate diets like the Standard American Diet (SAD).

And...

Thiamine and diabetes: back to the future?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8505293/

This article discusses how thiamine supplementation can help diabetes.  

You might want to check with your doctor about your A1C 6.3.  That's still rather high.  There's lower risk of developing diabetic retinopathy and neuropathy if the A1C is lower than 5.7.  

With thiamine, my last A1C was 5.1.  

Hope this helps!

[Tarmander]

Hi,

I wanted to follow up on this and just let you guys know it was not gluten.

Blood tests came back negative for celiac.

Real culprit was a prescription drug that changed brands and ended up being different then what I was taking earlier.

The symptoms I mentioned above didn't come back after I quit gluten, but when I started taking this drug again, they kicked in.

I am sure you get lots of fly by posters on this forum who make a post and then disappear.  I am thankful for the input from you folks and your help.