cnazrael89

11 hours ago, Fairy92 said:

Thank you for responding! I wasn't sure if anyone on the Internet would care about a 30 year old mum of 2 young children from nz haha 😊

Great group of people on here, as you can tell from the awesome responses! I have posted multiple LONG posts and always get great advice, links to research and the support I was needing at the time! Don't be afraid to ask questions! I have asked a bunch on here and done a lot of reading on here by typing into the search bar at the top of the page what I was looking to find more info about and would read through the results. Take care!

@cristiana

I'm glad that I was able to get my DEXA scan too! They actually had a cancellation the day I was scheduling mine and got me in the very same day even (wasn't supposed to be until after January originally, so that was really nice). 

I asked my GI about retesting labs after a period of time and they got back to me today saying 3-6 month intervals for lab checks for now to monitor the supplementation. My GI wanted to see me for my follow-up appointment within a 3 to 6 month period after initial diagnosis to recheck celiac antibodies anyways so I think I could just get my other vitamin/mineral labs rechecked at that appointment. I think that would give my body the time it needs to start healing and get some of my nutritional labs corrected on supplementation.

I do have the option to get my vitamin D checked at any time through the hospital lab as they have "health screening" labs I can just pay a fee to get drawn whenever. So that one I can check on my own whenever! Good safety net! Thank you for your reply! Take care!

@knitty kitty

As always thank you for such great info! It helped solidify some of my thoughts and things I had come upon while reading about copper deficiency. I found on Amazon, Copper Glycinate 2mg (brand "Pure Encapsulations"), I was having a hard time finding any 1.5mg tablets so I just bought the 2mg strength. 

As far as the vitamin D is concerned; It initially was 27 ng/mL on 10/13/22. I started myself on 10,000 units prior to my GI appointments and I had been taking 10,000 units up until 11/4/22 when another Vitamin D level got checked incidentally with a lump of other labs and it had come up to 42 ng/mL. Since the GI mentioned just doing the 5,000 units/day I backed off to that dosage and have been on that for about 1 week but have been feeling like the 10,000 units I was feeling better. (I don't know if it is related to the vitamin D or not though as so much has changed at the same time).

I have been waking up every morning and taking a zyrtec, omeprazole (GI says I should stay on this for 3 months...I don't know if I agree 100% but they said because I have chronic Duodenitis I should take this...), I take a B complex 50 and Benfotiamine 300mg. After lunch time meal I have been taking my Vitamin D 5,000 units and a second Benfotiamine 300mg. Around bedtime I take Magnesium glycinate 350mg.

I just ordered Calcium citrate 1,000mg which I plan to take when I take my vitamin D as it sounds like they play nice together. I just need to figure out when I can take copper now.

I went from no medications daily to taking so many supplements/meds in such a short time...It is a bit overwhelming and has been a learning curve for sure! Thank you for your help! I cannot stress enough how much it has meant to me! I feel so much more equipped to talk to the doctors about stuff and have really been able to advocate for myself better than I would have otherwise been able to!

Hello everyone! I'm a 33 year old Male and I was diagnosed with Celiac disease via blood and duodenal biopsy. My endoscopy was on 10/24/22 and during my follow up visit a ton of labs were ordered, a dietician consult (haven't had my appointment yet) and a DEXA scan was ordered. Much to my surprise my B vitamins were within normal range besides my B6 was elevated. I was having a lot of symptoms of B1 deficiency which I did discuss with my GI provider and they said it was fine to be taking my B complex along with Benfotiamine despite my blood level results being within normal parameters. So I feel better about that situation now but still having the pitting edema in the lower legs along the shin bone up and down. I am still having numbness/decreased sensation in certain areas of my forearms as well. My headaches initially went away with going gluten free on the 24 of October but just came back again yesterday and has persisted ever since yesterday. I am still having consistent joint pains that haven't let up much at all since going gluten free. (I do understand I am very early in my healing process as my biopsies showed moderate to near complete Villous atrophy). Hoping some of these above mentioned things do get better over time as I begin to heal.

My Iron studies all looked good as well as my Vitamin A, E, Carotene, PT/INR, homocysteine, and MMA were all in normal parameters.

However, I was deficient in my copper level and my zinc was elevated double the upper limit of normal. My GI provider reached out to me today and told me to begin supplementing copper 1.5mg daily and "stop taking zinc supplements, if I'm on any". I have never taken any zinc supplementation in my life that I can remember. I did a little reading and it seems like copper and zinc are antagonists of one another. If that is the case, it seems likely that if I'm low in copper, my zinc will increase? If I were actually taking zinc, there is potential for my copper to be low due to that but that is not the case for me. So, in theory if I take a copper supplement it should help my zinc level come down since they are antagonists of one another?? Any insight on this topic would be helpful.

My vitamin D was insufficient range and my GI said I could safely be taking 5,000 units of vitamin D for now, which I am doing.

Now...on to the DEXA scan... I had my scan this morning and the results came in through my online portal but my primary care doctor actually called me this afternoon to tell me I have Osteoporosis with a "T score of -2.6 in my Left total hip, -2.6 in my left femoral neck, and -1.8 T score in my lumbar spine" and the report says "Bone density is within the osteoporosis range based on WHO classification" So they said definitely be taking my Vitamin D 5,000 units every day, add 500-1000mg of Calcium supplementation, and take the copper supplement. Are there certain types of calcium and copper that I should take that are better absorbed than others? They also want me to make a follow up to discuss different medication options for my osteoporosis. They said I can take a pill form, injection, or IV infusion. Does anyone have any experience with any of these medications for osteoporosis? Is it necessary to get put on a medication for it if I am healing my gut and taking the appropriate supplementation they've recommended? Any first hand insight or information about this would be greatly appreciated! I definitely want to do all that I can to restore my bone health but don't want to do anything that might make matters worse. Thanks for reading!

Thank you for your response! Yes, it is shared desks/computer's, etc. I guess the purpose of the wipes was to physically wash and remove crumbly bits and food that may be there. Thank you for your advice and I will be sure to be frequently washing my hands and having a clean space for eating my lunch. 

Newly diagnosed with Celiac disease by blood and biopsy. I've been eating gluten free (whole foods only) for 2 weeks and it has been about one week since my wife and I did the huge purge of every gluten containing product in our kitchen and cleaned everything in the kitchen we could and replaced things that are recommended to be replaced. After doing that I felt really comfortable in my kitchen again and felt safe.

Now, when I go to work that is a different story. I share a small office room with 5 other people. While I am at work, I am the only person in the office space besides when the shifts change over. We have 2 mini refrigerators in the office and let me tell you...my co-workers are fairly messy with their food. I physically can see crumbs on the desks/keyboards at times when I come in and they certainly aren't careful with food in the refrigerators. The other day, there was literally a flour tortilla just laying on the refrigerator shelf on the rack (no plate or anything)!! I have been coming in and wiping desks, keyboards, phones, computer mouse, refrigerator handles, etc. with disinfecting wipes...Am I going crazy??? Or is this a real thing and risk to my health and I should continue to practice this level of precaution? I'm all freaked out about cross-contamination since I am being so careful at home with my food choices and cleanliness. My lunch bag goes in the refrigerator at work too but has a zipper and would minimize risk of anything falling into it but will get contaminated on the outside probably.... Any thoughts or comments on any of this? Am I going overboard? I certainly cannot ask my co-workers to adapt to my diagnosis/needs...

Sounds like you are doing very well! Good job! That is an awesome achievement and you should indeed be very proud of yourself! Keep taking care of yourself. Thanks for sharing! I was just diagnosed by blood and endoscopy and it's nice to hear about your success! Gives me hope! I've been gluten free since 10/24/22. 

@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. 

On 8/15/2022 at 1:21 PM, Scott Adams said:

(Zenavea) Benfotiamine 300 MG (Amazon)

@Scott AdamsQuick question on this brand of Benfotiamine. I ordered this because it is Gluten free and saw that you also used this company. I received my bottle and it states it is indeed gluten free but it has other information stating that it is produced in a facility that processes wheat containing products. You haven't had any troubles? Does your bottle have the "Allergen Statement" that mentions facility/machinery that also has wheat? Is this something I need to be concerned about?

@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....

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.

11 minutes ago, plumbago said:

Quick question: What was the result of the biopsy they did for h pylori?

It says "special stain shows no evidence of H. Pylori organisms."

Well I just got my pathology report! I do indeed have Celiac Disease. Appears as though I've 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 too so I apologize if you see it twice.

Well I just got my pathology report! I do indeed have Celiac Disease. Appears as though i've 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 too, so I apologize if you see it twice.

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.

@margaretiisabelThank you for sharing your story and experiences.

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!

Wow, just stumbled upon this particular old thread and I am so happy that I did! I have been consuming a gluten rich diet for the last month after positive celiac labs and was scheduled for endoscopy (performed 10/24/22-pending biopsy). I was eating A LOT of gluten in prep for my EGD...let me tell you, it has totally made me unwell emotionally and mentally. Just as the post is titled "Anger, Quick Temper, Depression" fits me to a T right now...I am normally very happy go-lucky person and pretty chill but right now I am generally upset, irritable (bad), generally feeling down in the dumps for no reason whatsoever, and very obsessive with certain things. Started gluten free whole foods only all day today and will be in the process over the next week or two of becoming a strict gluten free household. Seriously hoping the emotional/mental stuff subsides quickly because....my wife isn't all that thrilled with me at the moment...I'm driving her nuts with all of the above! I seriously feel unable to control my emotions...never experienced anything like this, to this degree in my life. Strange. @knitty kitty thanks for the research you posted on this thread regarding how gluten can affect the brain/mental health. 

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!

Also, maybe the results of the biopsy aren't blatantly obvious and the villi aren't too damaged yet because your daughter is young and you got a diagnosis early? Just another thought...

I am in no shape or form an expert, as I am just learning about Celiac as I go by reading on here and other links that are posted. However, in my opinion if your daughter had celiac symptoms, positive blood screening and an EGD/biopsy with results "suggestive of Celiac", I would think it would be safe to say she has Celiac disease? My endoscopy is tomorrow and I can honestly say if the results say in any way "suggestive of Celiac", I am taking that as gold for me as I had both ttg-iga and dgp-igg positive. That is my personal opinion, and it sounds like you will still be having an appointment to discuss your results with your doctor. Honestly, I am going gluten free regardless of the EGD biopsy results simply because I had 2 different positive blood tests that are highly specific to Celiac. Just my two cents for what they are worth. I'm sure you will get some good responses from moderators on here. They have such helpful information to help guide your thinking!

Awesome, thanks so much! I had found and read through the Thiamine paradox by reading your blog and finding the link to that information by Dr. Lonsdale. I'll check out the youtube link! 😀 

21 minutes ago, knitty kitty said:

The B vitamins are water soluble.  Any excess is excreted in urine.  They are safe and nontoxic.

Quick question on benfotiamine. Since this is a synthetic, fat soluble form of B1 and it is more bioavailable than the common form of B1 in B complex supplements, do we need to worry about it building up and becoming toxic? Or is excess still excreted through urine?

@knitty kitty

Thank you so much! Will do! You've been so helpful with multiple posts and threads I've read/commented on. I really appreciate you!

On 10/16/2022 at 4:26 PM, LCAnacortes said:

I forgot to mention that my daughter had to stop dairy when she was little - like 6 or 7. This was before we knew we were probable celiacs (first degree family member diagnosed and another one genetically tested positive). Your 2 year old may also have celiac...

So the first time my son was exposed to a baby food with dairy in it, his whole entire body swelled and turned red and tight...had to go to the ER, Epi pens, etc etc....got formal allergy testing and they said he was anaphylactic to dairy (of course) and had mild egg allergy. He also had a severe allergy (on IgE blood work) to cats. We got rid of our cats, maintain a strict dairy free diet for him and follow the allergy doctors recs on eggs (no whole egg but baked in is fine). He is now 2 years old and has consistently had diarrhea/mushy poo his entire life (within the last month has had a few random somewhat soft formed stool few and far between). We thought after we honed in on the allergy stuff his poo would get better. He also has keratosis pilaris all down his arms but recently has had two pimple looking bumps. One formed on his left side face and had a "white head" that he scratched open and won't leave it alone and the other is on his posterior forearm that formed a "white head" and popped. They both seem to bother him. We did get the allergy physician on board with testing for celiac and they ordered the reflex test which ran his total iga (normal range) and ran his tTg-IgA (<2 normal) and it stopped the test because tTg-IgA was fine. I asked if they could run dgp iga/igg and they told me that was getting to specialized and we would have to get our pediatrician to do a formal referral to a pediatric celiac specialist (neighboring state)...frustrating because it is just a lab test and if it is positive then we could do the referral!! Anyway, sorry I'm always so lengthy with responses. We have an appointment for him a week after my egd biopsy so hopefully the pediatrician will be open to more testing for my son just to make sure. I'm not convinced yet that he doesn't have Celiac...we'll have to keep him on gluten of course to get further testing if they order it but otherwise I'm curious to see what happens when we go complete gluten free household...the results may speak for themselves. Thanks for reading. Take care.