Endoscopy procedure report. Waiting for Biopsy results.

[cnazrael89]

Hello all, quick recap from previous posts I've made:

Strong family history Celiac disease, personal Celiac symptoms: prompted Celiac testing by my request. Results below.

tTg-IgA 11 (0-3 negative)

DGP-IgG 94 (0-19 negative) 

Total IgA 144 (68-408 standard range)

Endoscopy prompted by above results. Had my endoscopy yesterday. I was very happy with the endoscopist. I asked the questions I wanted to! I asked how many biopsies and where do you take the biopsies for celiac testing? His Answer: 6-8 samples (1 from stomach and then the rest scattered in the duodenum and duedonal bulb). He told me after the procedure that he took 8 biopsies total. Very happy with that! 

"Procedure report:

Esophagus: normal mucosa noted in the whole Esophagus. 

Stomach: normal mucosa noted in the stomach. Biopsies were obtained to evaluate for H.Pylori infection.

Duodenum: patchy discontinuous erythema of the mucosa was noted in the duodenal bulb and second part of the Duodenum. These findings are compatible with duodenitis. Random mucosal biopsies were obtained to evaluate for hisilogic features of Celiac disease."

He wrote a prescription for omeprazole 40mg by mouth daily. He also said approximately 50% of the time he's not able to see Celiac type changes on EGD and that it is diagnosed microscopically.

Now I wait for the pathology report which thankfully they send to a GI specific pathologist.

Any thoughts on the Duodenitis? The words "patchy discontinuous erythema" in the duodenum and duedonal bulb make me go hmmm....clearly speculation on my part because he couldn't see villous atrophy on the EGD and it could be caused by other things. Now the waiting begins. Up to 2 weeks he said and the results get mailed to me. Thank you, feels good to be able to put it all out here. Having a hard time shutting my brain off and basically Celiac disease is all I can think about...hope these thoughts quiet down!

[Scott Adams]

From the blood test results alone I would say that you very likely have celiac disease and should be on a gluten-free diet. The "patchy discontinuous erythema of the mucosa was noted in the duodenal bulb and second part of the Duodenum" may also be indicative of celiac disease, but of course your doctor would need to confirm this.

[margaretiisabel]

I have been gluten free for many years, as I was diagnosed at Children’s Hospital Boston at a year of age.  They didn’t know how to treat it 68 years ago, but, my Mother went o the library and got many books on nutrition, plus my pediatrician prescribed liquid vitamins that were so important.

My Mother tried one food at a time, and if I had no symptoms she tried another food.  My diet at first was Bannanas and Curds, that she made every night with a rennet tablet and hung the curds in a cheese cloth and the liquid that dripped out I didn’t drink, but the curds were an important source of protein as well as Neutramigin instead of milk.  This was before pampers, so cloth diapers had to be soaked and washed separately.  She kept the house very warm and didn’t take me outside in cold weather.  She didn’t allow my cousins to visit because of whooping cough.  But somehow I caught it and survived that, plus measles and chickenpox.  I have had several episodes throughout my life, but I would go to a gastroenterologist who did an endoscopy and sure enough the villi were turned over, I couldn’t digest the nutrients from my food and it took about 6 weeks before I felt better.  I have cheated several times, but, to be honest it’s not worth it, feeling horrible.  I will be 80 in January and I don’t cheat, but I still read labels and I can eat very well and feel good.  I’m thankful for all the Doctors I’ve had throughout my life and my mother who studied nutrition and help me to recover.

[knitty kitty]

@cnazrael89,

I agree that you probably have Celiac Disease.  

Do get checked for vitamin and mineral deficiencies.  

Be careful with omeprazole.  PPI's like omeprazole can cause continuing inflammation.  Usually Gerd symptoms are caused by an underproduction of stomach acid.  Omeprazole inhibits stomach acid secretions causing poor digestion and nutrient malabsorption.  Thiamine Vitamin B 1 is needed to produce and secrete stomach acid.  Increasing Thiamine intake will stimulate stomach acid secretions.  Benfotiamine, a form of thiamine, has been scientifically shown to promote intestinal healing.  

Please discuss supplementing vitamins and minerals with your doctor and nutritionist.  

[cnazrael89]

Thank you @knitty kitty. I had reservations about starting omeprazole as I personally feel the inflammation in the duodenum is gluten related as I started to have burning near my stomach area at the end of doing my month-long gluten rich diet prior to endoscopy. I plan to discuss the omeprazole when I have my appointment to go over the biopsy results (should be any day that I get the results). Also, at that time I will bring up getting checked for vitamin and mineral deficiencies and will discuss the use of vitamins and minerals. I have been taking notes on your comments/posts/blogs regarding vitamin and mineral deficiencies and the more bioavailable forms of supplements that you have discussed/linked research. To be honest, I already have purchased Benfotiamine 300mg (Zenavea brand), B-complex 50 (Solgar brand), Magnesium Glycinate 350mg (KAL brand) and Vitamin D 5,000 units (NatureMade brand) in preparation for after my labs are drawn/discussion with my GI (I can always return if needed as I have not opened any of the bottles). Take care, and as always, thank you for your input!

[cnazrael89]

@margaretiisabelThank you for sharing your story and experiences.

[cnazrael89]

Well I just got my pathology report! I do indeed have Celiac Disease. Appears as though ive gone undiagnosed for some time. Haven't talked to a doctor about the report yet as I stumbled upon it on my patient portal. Doesn't give a Marsh classification but from what I can gather Marsh 3b?? It doesn't go into IEL ratios or whatever in the report. I have attached 2 snip-its of my pathology report for your review and thoughts on it! Thanks in advance.

P.s. I will post this in the other threads I started to so I apologize if you see it twice.

[Scott Adams]

I don't see a specific Marsh classification on this, so you'd likely need to ask your gastro directly, but no matter the exact score you at least now have your answer and can go gluten-free. More on March scores is here:

 This article may also be helpful:

 

[cnazrael89]

7 hours ago, Scott Adams said:

I don't see a specific Marsh classification on this, so you'd likely need to ask your gastro directly, but no matter the exact score you at least now have your answer and can go gluten-free.

Thank you @Scott Adams! I will certainly do that. As you said, regardless of the classification I now can begin the road to being well again. So happy! My wife has been totally supportive of this and we did the deep kitchen clean-out, replaced toaster, did a self-clean on the oven (which is new this year), replaced food storage containers, all gluten containing food items given away or tossed, etc. I personally have been eating only whole food items since my endoscopy and within 4 days I noticed some symptoms (headache, fatigue, booty irritation) fade away just to return a couple days later and have been persisting again. I have been pushing and pushing my GI to order labs for nutrient deficiencies but have not been able to get anywhere with them for whatever reason. Last night I started to have increasing issues, which actually scared me while at work, almost to the point of going to the ER but luckily somewhat subsided enough to make it to an Urgent care today. The leg swelling has persisted over the shin area (I'm 33 years old with no heart, liver or kidney disease), lightheaded, "foggy", weird blood pressures (112/99, multiple readings like this), elevated heart rate (105), random little "twinge" like sharp jabs in my left chest intermittently and ringing in my right ear sporadically. I finally had enough and decided to work around the GI office this morning since they weren't helping me with what I know I need and went to the Urgent Care with a list of the labs I wanted drawn before I start my Benfotiamine, B complex, Vitamin D, and Magnesium Glycinate. Without a single question they drew labs for B1 (whole blood/TDP), Folate, B12, Vitamin D, Methylmalonic Acid (MMA), and Homocysteine. I honestly felt like I immediately needed to take the vitamins as soon as I got home after my labs being drawn because the way I was feeling. I think I either was heading into wet BeriBeri (my opinion) or already have been in Wet BeriBeri mildly, with my symptoms. A shout out to @knitty kitty...you have provided so much direction for me through this process and I am so grateful I found this website...I held out on taking my supplements until my labs were drawn because I wanted to know as close as possible what deficiencies I may have prior to starting them. So far I am already feeling better in terms of the lightheadedness, I feel kind of energized and no weird chest pains anymore (thank God). My Diastolic blood pressure is back down in normal range as well, which had me pretty worried actually. I feel like I had to kind of "Go Rogue" on this because I think I was getting into danger and the GI office certainly was not helping. I knew there was no harm in at least trying the supplements to see if they helped.

Lastly, I don't know if it is the change in diet or what, but I am losing even more weight since last week. I'm 6 foot 3 inches and last week I was 158 lbs and now I'm down to 154 lbs. Six months ago I was 168 lbs. I had been at around 158-160 for a couple of months but suddenly after switching to Gluten free/whole foods only it is going further down...How can I help combat this? As my Villi heal and I'm able to absorb more I hope that will help the most but what can I do to help maintain my weight in the meantime eating such high quantity of only fruits, vegetables and meat? any suggestions would be appreciated! Take care everyone.

[knitty kitty]

@cnazrael89,

Thank you so much!  I love to hear about successful experiences!   

I did not realize you were having such symptoms!  Not a doctor, not diagnosing, but those symptoms are definitely seen in Thiamine deficiency! 

If you start having the tachycardia, low blood pressure, etc., go to Urgent care and ask for an IV of thiamine (probably thiamine hydrochloride) and a "banana bag" (an IV bag full of B vitamins, riboflavin giving it the yellow color).   Glucose should only be given after thiamine. 

I'm concerned about "Refeeding syndrome".  As your body changes from burning fat and muscle for energy (which is why you are losing weight), your electrolytes and other vitamins (or lack thereof) can cause some serious health problems.  Take this article with you so the doctors will recognize it...(you'll have medical professionals as witnesses so they can educate your doctor...)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

And...Here's Dr. Lonsdale's explanation...

https://www.hormonesmatter.com/refeeding-syndrome-thiamine-deficiency/

And...

https://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

More.... 

https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency

And...Elliott Overton on high dose Thiamine...

https://m.youtube.com/c/EONutrition

You'll stop losing weight as your body starts functioning properly.  You've already seen some improvement.  Some people experience a "thiamine paradox" where they feel worse, but keep taking thiamine because it does go away.  It's just your body adjusting.  

As for diet, I found stews cooked until really tender is easily digested.  I ate small meals (bowls of stew) about three hours apart.  I ate what I could, and I supplemented my vitamins and minerals.  Vitamin deficiencies need to be corrected as quickly as possible to prevent lasting damage.  Eating food to correct a deficiency can take years and leave permanent health problems.

Some people try nutritional replacement drinks like Ensure, but they may contain dairy which isn't good on the villi as dairy can cause the body to react as though casein (the protein in dairy) were gluten.  (Yes, another gluten doppelganger.)  

Do explore Elliott Overton's channel as he explains High Dose Thiamine so much more concisely than I can. 

Do keep us posted on your progress!   

Thanks again!

Edited November 5, 2022 by knitty kitty
Add more information

[cnazrael89]

@knitty kitty

Thank you so much, I will look through all of those links that you added! I will certainly go back to Urgent care if symptoms re-occur like that and ask for Thiamine IV. I did take Benfotiamine 300mg and my B complex 50 which has another 50mg of the less bioavailable form of Thiamine. I will continue to take them daily moving forward so hopefully things will only get better and not go back to feeling that way. 

Question: So my Whole blood sample for B1 (TDP) is a send out lab and will take a few days to come back they said but my other vitamin labs started showing up in my online portal. Would it be unusual for them to be normal? My folate is 16 ng/mL (range 2.76-20), Vitamin B12 is 685 pg/mL (range 239-931), Vitamin D 25 Hydroxy is 42 (up from 27 as I have been supplementing D already since I knew my level a month ago), and Homocysteine 8 umol/L (range 6.6-14.8). All I have pending now is the B1 test and Methylmalonic Acid (MMA). Like I said before, I have only been eating whole food since 10/24/22 i.e lots of banana's, avocado's, green leafy salads, carrots, zucchini, squash, lots of blueberries and blackberries, broccoli, cauliflower, bell peppers, radishes, pork, chicken, beef, canned tuna and canned salmon. I've only drank water and coffee as well. Is it possible that I was getting enough vitamins by eating in such a way to show "normal" blood values on vitamins but still be cellularly/organ/tissue depleted on the vitamins? I'm new to all of this vitamin stuff and testing and whatnot so I was just curious. Otherwise, it makes me feel like I'm just kind of crazy because I was certain these labs would show deficiency....

[knitty kitty]

@cnazrael89,

It takes a special expensive method and machine to measure a particular form of thiamine present in red blood cells.  

Blood tests are not always accurate because most of the vitamins are used inside the cells.  The body regulates a certain amount of each vitamin to be in the blood in order to supply important organs like the brain and heart.  So the tissues can be depleted, while there is a "normal" level in the blood.

Blood levels can reflect how much you've consumed in the past day or two.  Your diet can vary in the amount of thiamine it contains from day to day.  So, on days you have less thiamine in the diet, the more the deficiency symptoms become apparent.  Other days you may feel great after having more thiamine in your meals.  This waxing and waning of symptoms can be really frustrating.  I know I thought the symptoms came and went because of something I ate, but keeping a food journal didn't help me find one particular food or combination of foods to be at fault.  What wasn't in my diet in sufficient amounts was the cause.  

Vitamin B12 can be stored in the liver for three to five years.  By the time a B12 deficiency shows up in tests, you've begun to exhaust all of the stores of B12 in the liver.  Some people can get B12 Deficiency Dementia BEFORE there are changes in blood tests.  

The Recommended Daily Allowances for vitamins were originally set right before World War II.  The Recommended Daily Allowance for each vitamin was set as the lowest level needed to prevent disease.  Remember the Great Depression and the Dust Bowl years occurred right before the war.  So many young men joining the Army were suffering from malnutrition, the Army issued these "new" vitamins to all the soldiers in their mess kits.  

Our world has changed since then.  Our soils have become depleted in minerals.  Our foods are processed which destroys micronutrients.  We have more pollution, environmental toxins, and stress.  We're getting fewer nutrients from our foods while our bodies need more in order to cope.  But the RDA has not kept up with these increased needs.  

For example, we now know that having a Vitamin D level in the eighties allows Vitamin D to act like a hormone and regulate our immune system.  This is way above the minimum requirement to prevent disease.  And researchers are finding out that the same thing applies to the B vitamins.  Our bodies work much better if there's an abundance of vitamins.  This is especially true of Thiamine.  

Hope this helps!

Edited November 5, 2022 by knitty kitty
Typo correction

[cnazrael89]

@knitty kitty

This helps a lot! Thank you for taking the time out of your life to explain all of these things in such great detail! Take care! (I will try my best to be less needy). By putting all of this out here, it is helping me to learn about this disease I just found out I have and also get a lot off my chest and helps with the worry and anxieties of the newness of it all. 

[knitty kitty]

@cnazrael89,

I'm here because once I was needy. 

I'm thankful that @Scott Adams has been so tolerant of my long winded explanations.    

You take good care of yourself!  

Knowledge is power! 😺

[margaretiisabel]

26 minutes ago, cnazrael89 said:

@knitty kitty

This helps a lot! Thank you for taking the time out of your life to explain all of these things in such great detail! Take care! (I will try my best to be less needy). By putting all of this out here, it is helping me to learn about this disease I just found out I have and also get a lot off my chest and helps with the worry and anxieties of the newness of it all. 

You are not Needy, we all need reliable information about Celiac.  Your Gastroenterologist will do an endoscopy if you complain about the Symptoms, he will see that the villi in your small intestine are literally turned over versus standing up straight.  If they are turned over the villi can’t absorb the nutrients in you food, thus you become tired, grumpy, and you don’t know why. Well gluten causes the villi to turn over.  If you don’t ingest gluten, the villi in the small intestine will stand up straight and absorb the nutrients from your food and you will feel wonderful.  Believe me, don’t cheat, you can shop for gluten free foods that are available.    Wishing you the best, Margaret M.