Confused about endoscopy preparation

[normagain]

Hi all. I got lab report Saturday morning that seemed pretty much to confirm celiac. Flunked 3 of 4 tests with TRANSGLUTAMINASE an alarming 189.5 with normal range less than 15.  Is that number real high or just moderately high? I started celiac diet that morning with breakfast.

Anyway the dr office called this morning (Monday) to set up endoscopy. At first I declined the endoscopy thinking the blood test was pretty conclusive and that I would just do the gluten diet but called back to schedule an appointment because I want to distinguish between celiac and yeast problem that I may also have. So thought it important not to question myself whether I did the right thing in future days. I asked the assistant if it was ok to continue celiac diet before endoscopy scheduled for May 31. She replied yes no problem. But many articles on inet recommend eating gluten prior to to endoscopy. So who do I believe? Hopefully this would be the doctor's directive and not her own thoughts.

[trents]

No, it is not okay to begin a gluten free diet that far out from the endoscopy/biopsy. Doing so will likely compromise the results and could put you in a conflicted situation between blood test results and biopsy results. However, you have plenty of time to go back to consuming gluten and expect a valid biopsy by May 31. Just eat the gluten equivalent of 4-6 slices of bread daily.

[normagain]

Thanks. As an aside I have been making my own sourdough bread since last June and half of it was with einkorn flour that has never been hybridized. Allegedly the the gluten is weakened. I did notice after a few weeks that I was sleeping longer which still is not enough but much better than 2 hours. So I am hopeful that the diet will greatly help even though I am a senior citizen. Never too old as they say

[trents]

There are anecdotal claims out there that bread made from heirloom wheat and also sourdough processes lowers gluten content or alters the gluten enough to permit some to consume it without issue. However, there is not yet a scientific consensus around this so I wouldn't assume it is doing you know no harm. We can experience gluten exposure that is subclinical from a symptomatic standpoint but that does not mean there is zero inflammatory response happening in the gut. I am 73 years old and diagnosed over 20 years ago.

Edited April 8, 2024 by trents

[normagain]

Agreed. Mainly I was just saying my sleep did improve but after eating sourdough but certainly not enough. However, stomach problems worsened over last 3 months. I'm hoping for more improvement when I stop eating gluten after endoscopy. I noticed belly bloat way back in h. s. and of course worsened over the years so I don't know how much gluten damage can be unwound at this point in time. What do you think?

[trents]

Good question and I don't know that there is a definitive answer. It probably varies enormously from person to person depending on how much damage was done and what kind of damage. I know for certain that my celiac disease started at least by age 37 and it was another 13 years before I got an official diagnosis and started on the gluten free journey. But looking back over my life there is evidence that it may have started much earlier than 37. I'm looking at short stature, frequent infections, constipation, gas, etc. from when I was a young kid. Somehow I lived through all of that. Yes, I have osteopenia but in pretty good health otherwise. I think there are a high percentage of us celiacs who lived with it for many, many years before symptoms and effects got bad enough that we started looking into it. The medical world is just now beginning to become aware of celiac disease and it was only a couple of decades ago it was thought to be a rare condition, 1 in 5000. Now they are saying 1 in 100 and it's going steadily up. 

[Scott Adams]

As @trents mentioned, Einkorn should probably be avoided by those with celiac disease, even though it seems to be less toxic than all other wheat varieties. The sourdough process further reduces gluten, so it would be very interesting to run a gluten test on the end result--I suspect it might be close to gluten-free--depending on the sourdough strains, possibly even gluten-free, but without actually testing it you can't be 100% sure of this.

We've done some articles on both topics:

 

 

 

 

[normagain]

Just for clarity, I ate sourdough before my blood test showing high probability of celiac. Once confirmed, I have no intention whatsoever of eating sourdough or anything else with gluten in it. But I will need to see some sort of healing within a few months to stay on the diet at this stage of my life.

[trents]

Healing begins as soon as you begin eating truly gluten free. But learning to eat truly gluten free instead of just eating a lower gluten diet is more challenging than most people realize. You not only have to consider macro sources of gluten like bread and pasta but cross contamination issues like when gluten free things are cooked on the same surfaces with wheat things and sliced/served with the same utensils as are wheat things. You got to McDonalds and order a burger wrapped in lettuce but it was cooked on the same grill as pancakes or breaded fish. Fries cooked in the same oil with breaded chicken breast. Gluten free pasta at Olive Garden boiled in the same pot with wheat spaghetti noodles. You buy Quaker oatmeal but it's cross-contaminated with wheat because it was grown in the same field with last year's wheat crop, transported in the same trucks, stored in the same silos and processed on the same equipment as wheat breakfast cereal. Once going truly gluten free the small bowel villous lining begins to slowly rebuild but it can take two years or longer to heal completely. But, you should see significant improvement in symptoms within weeks.

[normagain]

I have a good chance of meeting those tight cross contamination parameters at home but how can any restaurant be trusted at that level. My brother who got celiac about the same time as you, follows a very strict gluten-free regimen,  but is not overly concerned with cross contamination.  I tend to take things more literal and am already worried about eating out. I totally understand what you are saying. Sorghum is gluten free but I already passed on a (fermented) variety that was my first choice because they stated possible risk for cross contamination. I had to order non fermented variety to get truly gluten-free as you described. Any tips on how to ensure truly gluten-free with a limited menu at a wedding where I suppose your only choice is to eat or not eat.

[trents]

You seem to be of the not super sensitive subset of celiacs so that is in your favor when forced to eat outside of your home where you find yourself in situations where you can't maintain tight control of cross contamination. I'm like that too. Just do the best you can in choosing things from menus or when in ala carte situations. In restaurants you can request that what you order to be cooked in a separate clean pot or pan.