cnazrael89

6 hours ago, Rogol72 said:

FYI. Here's a case report of SIBO treatment using the functional/integrative approach with herbal antimicrobials and Low Fodmap diet. Though the patient in the report was not Coeliac but had IBS, it was treated successfully.

https://www.spandidos-publications.com/10.3892/ijfn.2021.23#

 

That was a good read! Thank you for that! Feeling hopeful that I can eradicate it after treatment for it! Really restricting my diet right now to starve out those bacteria! Spacing out my meals and no snacking whatsoever as well. (Read that helps to starve out the problematic bacteria). Definitely feeling some hunger but trying to just ignore it temporarily because if I can do this right the first time, maybe I can beat it! Now that I've also identified the probable root cause for SIBO (celiac) and treating my celiac with gluten free diet, I'm decreasing the chance for SIBO reoccurance. That's what I'm hoping anyway! Interestingly, I've been on treatment since Tuesday and I started to feel sick (sweating, headache, sore throat, more fatigued/sleepy). I looked up treatment of SIBO and learned there is a "Die-off" period when you start fighting SIBO which can result in the symptoms I started having. Found that kind of reassuring that I'm killing the overgrown bacteria and my body is mounting up an immune response! 

I also was diagnosed in October 2022 with Celiac and now a few days ago was tested for SIBO and was positive for Hydrogen SIBO. I was tested due to ongoing celiac-like symptoms yet I am very careful with gluten free diet. I have now been told to take Doxycycline 100mg twice a day for 21 days, do a low FODMAP diet for 2 weeks and then do probiotics for 2 weeks after antibiotics are done. Hoping this treatment will clear it up! Hoping for a speedy, successful SIBO recovery for you all as well!

On 7/4/2023 at 11:06 AM, Scott Adams said:

It is certainly possible that there is another gastro explanation for your eczema, and perhaps treating the SIBO will help it improve. Since you are already gluten-free are you also making sure that you are on a low iodine diet, just in case it is DH? Iodine in sea food, dairy, salt, etc., can cause DH flare ups.

I have been dairy free mostly up until now minus a little yogurt here and there, I use pink Himalayan salt, I eat canned tuna maybe once or twice a week/shrimp 1 or 2x per week....I do eat 2 to 3 eggs per day. But overall I don't feel like I overdo those foods...thank you for the insight!

19 minutes ago, Rogol72 said:

I found some useful information from Dr DiNezza about SIBO, Probiotics and Low Fodmap diet.

Thank you, I looked her up and will read/watch through some of her stuff! 

Wanted to provide an update. I haven't been on much lately but have had a lot going on. I got a second opinion from another Dermatologist because my bilateral hand rash continued to get worse and worse and was becoming quite problematic for me. I ended up having "tapioca-like" bumps coating the palm of both hands, had bumps in between all fingers, rash/bumps/redness all over the tops of my hands and starting up my wrists. The new Dermatologist immediately said "You have severe Atopic dermatitis/Dyshidrotic eczema". I had been on all kinds of steroid creams, systemic steroids and whatnot and that wasn't working so they recommended Dupixent for severe dyshidrotic eczema. They said this can happen when I start reacting to something and I don't know what it is and just keep either ingesting it or coming into contact with something. Either way, Dupixent literally cleared the rash by the next day and the insatiable itch was gone. Now, it has come and gone since I started the medicine 1 month ago but overall is so much better. Still haven't been able to trace back to any certain exposures causing the rash at this point. The 2nd opinion dermatologist was confident this was not DH.

The other thing that happened and might actually be the cause of the sensitivities to foods and whatnot, I was diagnosed with Hydrogen SIBO yesterday. I was supposed to have a SIBO test 2 months ago but the machine was broken. They rescheduled me finally and I got the results from my GI doc the same day. They prescribed 21 days of doxycycline, low FODMAP diet, and OTC probiotics. Hoping that treating the SIBO will help with the food sensitivities/new allergies and help with this rash.

In the research I did, it seems like saccharomyces boulardii probiotic strain is a good choice for Hydrogen SIBO and isn't effected by the antibiotics and can actually protect from antibiotic related gut issues. If anyone has any good info they would like to share regarding SIBO, probiotics, Low FODMAP I would love to hear your thoughts. 

I am hoping SIBO has been the missing puzzle piece and my ongoing symptoms/issues will begin to lessen.  I've been gluten free since October 2022 when I was diagnosed with Celiac disease.

47 minutes ago, Scott Adams said:

There is some research that indicates that UV treatments help it, at least I was told that back in the late 90's, but I definitely don't recommend such a sunburn to anyone. It would be interesting if lesser levels of UV could help it.

Interesting, I have been out in the sun some and I actually felt like the itching and burning eased up after a few days of light outside time. But the relief was temporary and didn't last.

1 minute ago, Scott Adams said:

You can look this up, but the biopsy for DH needs to be done directly next to a blister. If they took a sample on a clear patch of skin that was totally unaffected by the rash, I believe they were not following the protocol for a DH biopsy.

I 100% agree with you on this and told the dermatologist this and they had total disregard for the information I provided about proper DH biopsy location. I should have just declined but to be honest I was desperate and also so hopeful maybe by chance it would show something instead of trying to arrange another dermatologist appointment as I had active new lesions and didn't know if I would have untouched lesions by the time I could get a different appointment....oh well I guess...just unfortunate, you can bring proper standards in for them and they don't listen to the person that has the problem.. thank you for the info as it confirmed my suspicions on the matter.

50 minutes ago, 648 said:

You might also ask about a more powerful steroid cream like Clobetasol. 

 

Were you able to read the actual biopsy reports?  You can learn a lot from them.

CLINICAL DIAGNOSIS: Dermatitis unspecified.

GROSS DESCRIPTION: This is a shave biopsy.

MICROSCOPIC DESCRIPTION: The specimen is a shave biopsy of skin present as multiple H&E stained sections on one slide.  The pathologic process is that of compact hyperkeratosis with areas of scale crust overlying a regular psoriasiform hyperplasia of the epidermis. There is spongiosis and a superficial perivascular distribution consisting mostly of lymphocytes. 

PATHOLOGICAL DIAGNOSIS: Regular psoriasiform dermatitis with spongiosis, see comment. 

COMMENT: This may be associated with psoriasis or lichen simplex chronicus and clinical correlation is recommended.

This is the report I just received this morning from Derm. The punch biopsy path report simply says "negative" next to everything they look for.

Fortunately they did put me on 10 days prednisone 20mg to calm this down and prescribed the Clobetasol cream since Triamcinolone wasn't doing anything at all and the rash was still spreading and popping up other locations.

The Derm I saw wasn't Interested in anything DH related. 

Thanks so much for your insight on this and personal experiences.
 

6 hours ago, Russ H said:

There is an association between coeliac disease and IgE mediated food allergy.

https://journals.lww.com/jpgn/Abstract/2023/01000/Celiac_Disease_Frequency_Is_Increased_in.9.aspx

It does not seem well understood currently. Have you looked at things like shower gel, shampoo and clothes washing detergent? I have become quite allergic to certain brands and come up in a rash if I use them.

Interesting little read. Thank you for that. I have looked into the body wash, shampoo and detergent but I may try changing what I use to something else that is safe and maybe tailored more for the sensitive skin now that I am having rash issues. I don't think that could hurt anything. Thanks for the tip!

10 hours ago, Wheatwacked said:

My first thought is vitamin D for the overall immune system failure.  From your description you might be in negative numbers, if that were possible.😀

I have been taking 10,000 IU of Vitamin D3 since diagnosis 6 months ago. Initially I was mid 20's when checked and last time I checked it in late February it was 68. I have maintained taking the 10,000 IU of vitamin D3 since that time as well.

10 hours ago, Wheatwacked said:

Fatigue, brain fog diarrhea and Nausea could all be low choline. In many it is misdiagnosed as gall bladder and the offending organ is removed. Choline, B6, B12 and folate help lower homocystein level, an indicator of cardiovascular inflammation.

I have been heavily supplementing since diagnosis. I take a B Complex morning and night, Benfotiamine 300mg three times a day, Copper 2.5mg daily (I was deficient at diagnosis and remained deficient as of February), Calcium approximately 350mg daily to make up for any dietary shortcomings (I have Osteoporosis at time of Celiac diagnosis), I take a vitamin K2 MK-7/MK-4 combo supplement daily, and Magnesium Glycinate 400mg nightly...

I think I am just getting impatient with the process because lately I have been feeling sicker than before I went gluten free. However, I think I am on the right track by eliminating the newly discovered food allergies and awaiting my SIBO breath test when the machine is repaired at GI office. Also, my homocysteine level was within the standard range when checked at time of diagnosis.

I think I am doing "all the right things" and just need to keep waiting out the healing time as I had near complete villous atrophy on my pathology report at time of diagnosis in October.

I do appreciate being able to get on here and type everything out as a narrative to help me make sense of things and get helpful input from people like yourself. I'm ready for the days where I can feel like Celiac isn't ruling my life and I can get to a new norm, where Celiac disease isn't the 100% focus in my life. I understand I always must be vigilant and smart about it, but ready to be able to take a deep breath of fresh air on the other side of healed intestines.

Thanks for taking the time.

11 hours ago, Scott Adams said:

To me the images look nearly identical to dermatitis herpetiformis, which is the skin condition associated with celiac disease. I had this on my right hand for years, and even tiny amounts of gluten can trigger it for weeks. If it is DH, iodine in dairy, seafood, salt and other foods like seaweed can also trigger outbreaks in some people.

PS - Due to the leaky gut condition that many celiacs have upon diagnosis, additional food and other allergies can develop and existing ones magnified, and after your gut heals this may change over time, and those additional food intolerances and/or allergies may fade away.

Thanks for your input @Scott Adams. Unfortunately, The dermatologist did some weird biopsies and if it is DH, they didn't see it with the punch biopsy they did. For one, I have been gluten free for 6 months so I don't know if they can get an accurate biopsy on it anyway. Secondly, they took the biopsy in a random clear spot on my forearm not even anywhere near my rash. In fact, the punch biopsy gave them exactly zero information. The other biopsy they did was a scrape from the actual rash/bumps on my finger. They couldn't give me a clear cut diagnosis of the rash from that biopsy either...they mentioned psoriasis, dyshidrotic eczema, and atopic dermatitis...I'm waiting for the actual report on the scrape biopsy to see their wording. They did prescribe 10 days more of prednisone 20mg and prescribed a stronger topical corticosteroid cream. We'll see what happens. Thanks.

Are you diagnosed Celiac? Your post doesn't mention why you are gluten free but mentions "other food Intolerances". I was diagnosed celiac 6 months ago and initially going gluten free helped my symptoms immensely. However, about 4 months in, I started to have re-occurring symptoms and actually feeling even worse than before. I had some labs drawn and it showed an unusually high eosinophil count which prompted an allergist referral. Apparently, I have developed many new food allergies which I am now assuming is the cause of all of the new/old symptoms to start up. I hope this is helpful in some way. Take care

Hello, I have continued to be vigilant in my gluten free diet; sticking with mostly whole foods with the exception of peanut butter, oikos yogurt, larabar's and the very seldom certified gluten free chip/cracker when I just want to have something that makes me feel "normal".

I was doing quite well up until the end of February, when I started to have fatigue, brain fog, Diarrhea, severe daily continuous headaches, congestion mostly at night, sneezing often mostly at night, itchy top of mouth and rash that started on both hands. Later, the rash started to appear on my neck and left side rib area. I saw my GI and got some labs drawn. Celiac antibodies all trending down appropriately for the amount of time I have been gluten free. CBC and CMP looked fine. I figured I had been glutened and that the symptoms would go away. The symptoms persisted and I kept looking into my diet to eliminate any possible gluten exposure. I decided to get rid of a seasoning I had purchased that was labeled "gluten free" and my headaches went away but the other symptoms persisted. Symptoms continued with the addition of Nausea that began after I would eat and would persist for about 1 to 2 hours after. I wouldn't ever vomit but just felt "ill" whenever I would. The rash on my hands, neck and left ribs continued to be flared up. I again reached out to my GI doctor due to the continued symptoms and new symptoms. They ordered repeat CBC and CMP, CRP, Stool culture, Calprotectin (stool), and Stool GI panel. all of the stool studies came back negative for infection/parasites/inflammation. However, on my CBC, now I had significant Eosinophilia that was not present just over a month before. My eosinophils rose from 4% up to 28% and my GI referred me to an Allergist/dermatologist for further testing.

I had a scoop biopsy from directly on some of the bumps/pustules on one of my fingers and then they took a punch biopsy from unaffected skin on my forearm (not near any lesions). I'm still waiting to hear back on the biopsy results for these. However, I was put on a 1 week medrol dose pack by my GI to help calm my system down and while I was on the steroid the rash slightly improved but the day after I completed the steroids, the rash flared right back up and actually was worse than before. Now, the rash continues to worsen and involves the entire tops of both hands and on all of my fingers. the neck rash and torso rash went away with steroids and haven't come back since. I have been using triamcinolone cream on my hands and it doesn't seem to be helping. The rash is extremely itchy, with burning and I am developing large cracks on my fingers with thickening skin. The cracking is painful. 

I saw the allergist and had scratch testing done. I reacted to pretty much every environmental allergen tested and reacted to many foods that they tested for. I reacted on the skin test to peanuts, watermelon, cucumber, walnuts, pecans, pistachios, hazelnuts, dairy, and almonds. The allergist then sent me for blood work testing for total IgE and specific food IgE to what I reacted to on skin test. I came back with Class 4 "very high" specific IgE levels for pistachio, almond, dairy, walnuts, peanuts, hazelnuts, and pecans. My total IgE came back 8,800 kU/L (standard range less than 214 kU/L). I'm still waiting to hear back from allergist regarding these results. It appears that my body is mounting a huge immune response and maybe a lot of the on-going symptoms I am having are related to possibly new food allergies. Does this sound like a gut permeability issue leading to new allergies, related to my Celiac disease? Also, important to note, the allergist specifically ordered a serum histamine level to assess for mast cell activation syndrome and my histamine was high normal at 8 (standard range 0-8). She also checked a rheumatoid factor and ANA which both came back normal. My allergist said she thinks I am just extremely Atopic and she wants to wait until the biopsy results come back for the rash to make any further plans. She mentioned wanting to put me on a biologic (dupixent) depending on whether the rash is atopic dermatitis....I have no idea about any of that though... She also wants to discuss putting me on allergy shots tailored to my specific allergens.

Allergist mentioned wanting to check for EoE as well at some point because I have been having issues with food getting caught in the back of my throat and having trouble getting it to clear when it happens.. I have an EGD tentatively scheduled for October as my GI wanted to go in and look after 1 year gluten free. She actually mentioned she may want to do the EGD sooner if my symptoms persist and at that point EoE could be assessed.

I was going to be checked for SIBO on May 7th but a part on the machine broke and they had to cancel it until it can be fixed.

Does Leaky gut related to Celiac disease cause full blown IgE mediated allergies to develop or is it generally more of just food intolerances that develop from leaky gut?

It appears my re-occurring/on-going symptoms may be indirectly related to my Celiac disease, by way of new food allergies but not specifically by getting glutened like I originally thought I was. Anyone experience something similar? It feels like I'm on the right track to getting things figured out. Any thoughts or suggestions would be appreciated! 

@Wheatwacked

Thank you for all the valuable info and links! I appreciate your input and tips! Haven't been using mouthwash and toothpaste is gluten free. I'm not on any prescription meds at this time and did finally find some gluten free labeled generic Tylenol which has been much appreciated as I was just trying to tough my way through the constant headaches. Thankfully, for now it appears the headaches have dissipated since stopping the "gluten free" labeled Mccormick blended spices. I think I was having a gluten reaction to them. Since stopping them, headaches are gone, I have a bilateral hand rash (much like I've had in the past prior to diagnosis and gluten free), fissures flared up again, and I have little pimple like bumps (different from the itchy rash) spread out on my chest and back that weren't there before! It feels like this may be the way my body is responding to my antibodies coming down and getting more sensitive to trace gluten in a gluten free labeled spice. This is my first experience with something causing a gluten reaction that is labeled gluten free and I used the product for several weeks to a month without realizing it was that! So now my body is trying to normalize I think. Thanks again!

On 3/2/2023 at 6:44 PM, RMJ said:

I hope you’ve found the solution! Please let us know how it goes.

I have been free from headaches since eliminating the spices...I have since broke out with the lovely itchy rash on both hands though. I am assuming it is DH as I have had this before but not since going gluten free. 

On 3/7/2023 at 5:50 PM, Beverage said:

I think Spicely brand of spices might actually be certified gluten-free. I use Morton & Basset, labeled gluten-free. Also consider magnesium deficiency can bring on headaches.

Thank you for the reference! I will check this out. My magnesium was 1.9 on blood draw and I had been taking just 200mg of elemental magnesium glycinate in the evening. I have started taking my magnesium in the morning and night for the past few days.

On 3/7/2023 at 4:51 PM, nutritionguy said:

An excellent reference I would highly recommend:

Real Life With Celiac Disease: Troubleshooting and Thriving Gluten Free, authored by Melinda Dennis, MS, RD, LDN, and Daniel A. Leffler, MD, MS, associated with The Celiac Center at Beth Israel Deaconess Medical Center (associated with Harvard).  You may get some good nutritional ideas when you look at their recommendations.

Thank you for the book idea, I appreciate your help! I'm going to check this out! Thanks for including the quote about FODMAP diet as well! Makes sense.

For the large majority of my diet I am eating fresh fruit, fresh vegetables, potatoes (russet and sweet), chicken, beef, pork, canned tuna (labeled Gluten free), eggs, and certified gluten free rice. We have some gluten free oreo's that are certified gluten free that I have eaten a few of, and we have some certified gluten free "pringle" type chips that I seldom eat but my family likes them.

I drink 1 cup of calcium fortified orange juice per day (no labeling regarding gluten), soy milk labeled gluten free, 2 cups of coffee per day with gluten free creamer and water.

I make a soy milk/chia seed (certified gluten free) drink that I have everyday.

I eat oikos certified gluten free yogurt, my peanut butter is labeled gluten free and I eat a gluten free Larabar every day.

I have stayed away from oats completely.

The processed foods we do have in the house are either labeled gluten free or certified but those are mostly for my wife and kids as I personally have been trying to stick with minimally processed foods. Ultimately, if I am having something that is processed it is either labeled gluten free or certified gluten free.

Supplements are all labeled gluten free and have not changed.

After writing this and reading your response, I thought more in depth if anything else could have changed in the last month. The only thing I could come up with was I bought some blended McCormick spices for meats that are labeled gluten free after reading about how McCormick seems trustworthy. After thinking about it, I started to have an influx of symptoms several days after starting to use those spices. We have been using 3 different blends and we use them on the meat and then also some on potatoes/veggies. I have ingested some amount of those spices every day since buying them. I didn't think it could be the spices because they are labeled gluten free and didn't think I could be that sensitive. Before buying those spices I was using single ingredient spices labeled gluten free. I am going to put the spices aside for a period of time and see if things calm back down. If things calm down, I think I may have my answer. I was consistently thinking it had to be the meat from the grocery store getting contaminated by the butcher but maybe its just the spices all along....

If that is the case and I determine it to be the spices, does that mean I'm fairly sensitive if I react to spices that are labeled gluten free? Would you then recommend trying to only use certified gluten free spices or just go back to using single ingredient gluten free spices and making my own blends?

Thanks for helping me come to what seems like a very obvious solution to my question. I hope that is all it is, as that would be an easy fix! 

Hello, I was diagnosed with Celiac disease via biopsy/blood. I am a 33 year old male. I went gluten free immediately after my EGD on 10/24/22 due to the doctor's recommendations. I am just over 4 months strict gluten free diet. I have not seen the inside of a restaurant since diagnosis and prepare all of my own food in a gluten free household for all meals and work lunches etc.

I was doing pretty good symptom-wise but for the past several weeks I have been feeling "off" again and having very bad daily headaches and fatigue. They feel identical to the headaches I was getting prior to diagnosis and identical to the headache I got early on in my gluten free journey when I accidently ingested gluten. They are intense headaches that last for days at a time without letting up and then go away briefly and then come back again. I have also on several occasions had intense gas pains/bloating for a 12 hour period and then it goes away again. I reached out to my GI doctor about the above symptoms. I really wanted to get all my labs checked at the 6 month mark but she thought it was important to check earlier to make sure things were okay in that regard since I have been on supplementation. I had a slight copper deficiency at diagnosis and was diagnosed with osteoporosis by DEXA scan shortly after my diagnosis. My B vitamins were all technically fine at time of diagnosis other than my B6 was elevated but I still have been supplementing with B complex. My Zinc was double the high normal value at time of diagnosis without being on a zinc supplement. I had vitamin D insufficiency at diagnosis as well.

Since being diagnosed I have been supplementing with B complex (50) daily, Benfotiamine 150mg three times daily, copper glycinate 2mg daily, Vitamin D 5,000 units twice a day, Calcium Citrate 333mg daily (was taking 1000mg initially but figured out how to get the rest from diet), Vitamin K2 (300mcg MK-7, 100mcg MK-4) daily, Magnesium glycinate 200mg (elemental) nightly. I take all my supplements on a scheduled basis and I am very diligent about taking them consistently.

Labs showed the following:

Copper went up to 64.9 from 63.1 (normal 70-140)

Zinc came down to 67.5 from 237.2 (normal 60-120)

Vitamin D 25 Hydroxy went up to 67.9 from 27 (normal 30-100)

ttg-iga came down to 3 from 11 (normal 0-3)

dgp-igg came down to 51 from 94 (normal 0-19)

I was very happy to see the nice downward trend of my antibodies after 4 months! Some minor tweaking of my copper supplement to help bring that up some more, but it looks like all my labs are doing okay. I didn't get any B vitamins rechecked since I have been supplementing and didn't take any kind of break prior to labs being drawn. I did get a CBC and CMP drawn as well but all was basically normal there other than it looked like I was slightly dehydrated.

Anyone have any inclination to why I may be getting these headaches that feeling like I'm being glutened? I really don't think it is related to being glutened. I have thought about a small chance of me being cross-contaminated by the meat I buy at the grocery store due to having a butcher there that prepares/packages the meat in the store. I plan on talking to them about their processes to see if that might be why I'm feeling like I'm getting glutened. Besides that, I have checked everything in my diet and all checked out. My numbers are trending down, so I wouldn't think I would be getting glutened as frequently as my headaches are.

If anyone has any thoughts on this or any suggestions, I am open to hear them! 

Thanks!

On 12/12/2022 at 12:44 PM, Graeme1 said:

 I understand that things could take months but it is the blood in my stool that is concerning me , I’m sure it’s probably hemarroid or fissure but have just got myself in a panic to be completely honest . I can’t find a great deal about this being a symptom of celiac and have started catastrophising a bit . 

I was diagnosed via blood/biopsy 10/24/2022 and one very annoying symptom I had been dealing with for about five plus years was anal fissures. Tried lots of different creams, suppositories, etc. but nothing would ever really help and if it did help, it didn't last. Before I was diagnosed, I did bring up the fissures at my GI consultation but she didn't give any insight as to whether or not it was related to Celiac. After my diagnosis, I had a GI appointment and the same GI doc told me now that I had an official Celiac diagnosis, she told me the fissures were related to Celiac. She prescribed me a special Nitroglycerin ointment that had to be compounded at a specific pharmacy. The Nitroglycerin was to be placed on the fissures 3x/day for 2 weeks to allow better blood flow to the area to aide in healing. She said that with the Nitroglycerin cream and being gluten free my fissures should be able to heal. I'd say, within the first 5 days of gluten free and doing the cream I had near complete relief from pain/inflammation down there and no more blood when I wipe (After 5+ years of suffering from this!!!!). Fissures have been mostly better since then, minus the 2x I have accidently ingested gluten in hidden ingredients and the very next day after ingestion I was having problems with the fissure areas again (pain, itching, bleeding). I used the cream for several days after each incident with gluten and again my fissure symptoms have resolved....I had other symptoms with both of those accidental gluten exposures like headache, fatigue, bloating, gas pain, etc. but I'm curious if I will have anal fissure flare ups each time I'm exposed to gluten....time will tell. I hope this was helpful and I know it is way TMI but seemed pertinent to the topic and I hope it is useful to someone out there. Take care!

@Rogol72

Wow, that would be awesome if you would send me the things you've bookmarked. I did read an interesting thing the other day on "UpToDate" about how young adults that get diagnosed with Celiac disease and have osteoporosis at diagnosis oftentimes can improve bone density simply by being gluten free compliant, taking calcium/vitamin D/correcting other deficiencies and doing weight bearing exercise...I want to discuss this with my doctor on the 7th of December to see if I can try this method for a period of time and get a repeat DEXA in like a year post diagnosis to see if there is improvement...please do send me the things you've been reading! I'd be interested in looking through it! 

@Rogol72

So far I was told to schedule a follow up with my primary care physician to "discuss medication options" but i don't know yet if i want the medication route or not...trying to get insight on what is the best plan of attack. I was deficient in copper which I saw can lead to osteoporosis and they did tell me to start supplementation of copper daily, which I've been doing and told me to do the calcium 1000mg and vitamin D (I've been doing 10,000). 

21 hours ago, Megawisdumb said:

I tell my sons...I became my grandfather in less than a month.

Funny, my wife and I have been making comments like this too. 33 year old male that now has osteoporosis and abnormally fatigued for my age. I had/have (improving) intense irritability, "short fuse" as I was getting sicker, so now we just say I'm a crotchety old man. I am generally a go getter who enjoys staying busy with little home projects and such but haven't had the motivation/energy to do more than work my fulltime job and help with the kids. Even that right there does me in every single day just doing the bare minimum. Things have been improving slightly for me though as I have been supplementing with Benfotiamine, B complex, Vitamin D, Magnesium Glycinate, among other things recommended by my GI for deficiencies/osteoporosis. Good luck on your continued healing journey.

Is the "TTG level" you had tested the tTg-IgA? A tTg-IgA of 226 with the standard range being 0-19 is markedly elevated. My tTg-IgA at diagnosis was 11 with the normal range being 0-3. I had my endoscopy with biopsies and the GI doctor could see that there were some patchy areas of inflammation but was not able to visualize any villi to determine if they were atrophied at all. He told me that Celiac is diagnosed microscopically (hence the biopsies). My pathology report came back with near complete villous blunting despite him not being able to see anything Celiac specific during the procedure. You need to wait to hear what the pathologist is able to see under the microscope. Hopefully it is a fast turnaround time for you to get your pathology report. Other important things they will look for and commented on my pathology report was "intraepithelial lymphocytosis" and "crypt hyperplasia" consistent with Celiac sprue. 

The good news for you is now that you have had your Celiac blood testing and also the endoscopy with biopsies, you could begin the gluten free life and begin to heal and have symptom improvement if you do indeed have Celiac disease. I was told after my endoscopy to begin a gluten free diet immediately even before the pathology report came back. tTg-IgA lab test is highly specific to Celiac disease and your level was over 10x the upper limit of normal, which is quite elevated. Celiac disease can cause deficiencies in your vitamins/minerals and you should discuss with your GI doctor once you get your results back about the follow up care you will be needing after diagnosis (assuming you do have Celiac). They tested me for Vitamin A, E, D, K (PT/INR), Folate, B12, B6, B1, Copper, Zinc, TIBC/Iron/Ferritin, Methylmalonic Acid (MMA), and homocysteine. Once I had my labs drawn I was instructed on which vitamins/minerals I was needing to supplement. There are a lot of great resources on this forum for more information on supplementation but definitely discuss the labs and supplementation with your GI provider. The other post diagnosis testing I had done was a DEXA scan to check for osteoporosis (which I was found to have). Also, they wrote a referral to a dietician.  I hope this is helpful. I am relaying information I have been told on this forum and also information from my GI doctor. I am young in my Celiac journey as I was diagnosed 10/24/22 but have really been saturating myself with information on here by searching in the search bar whatever it is I'm trying to learn more about. There are some awesome Moderators on here that have decades of Celiac experience and I imagine one or more will chime in soon to give you their input on your situation. Take care!

11 minutes ago, EmDerrane said:

I have looked up Duodenitis and it says too much use of NSAIDs which I don’t really take and my H Pylori was negative .

Exactly my same thoughts when I was waiting for my biopsy results too! Hopefully you can find out what labs they drew and see if they did in fact draw any Celiac labs that @trentslinked to above. If you had some positive celiac blood tests, the likelihood is high that you have Celiac Disease. You already have had the "gold standard" test to diagnose Celiac (endoscopy with biopsies), so now it truly is a waiting game unfortunately. If they didn't draw Celiac blood tests, you might ask to have them drawn even though you've had the endoscopy performed because if the blood tests are positive and you do indeed have Celiac as confirmed by biopsy, they can follow up on those blood tests later on to make sure they are coming down into normal ranges after you've been on a gluten free diet for a period of time. Just a suggestion. My GI doc plans to recheck my Ttg-IgA and DGP-IgG again, 6 months after diagnosis to make sure they're coming down after going gluten free. Hope this is helpful. I'm also new to Celiac so I don't necessarily know all the intricacies like the experienced moderators on here but I've picked a few things up so far from others advice that I hope are helpful for you too!

Hello @EmDerrane,

On my EGD procedure report the GI doctor said "patchy discontinuous erythema of the mucosa was noted in the duodenal bulb and second part of the duodenum. These findings are compatible with duodenitis." He told me right after the procedure he wasn't able to see the villi with his endoscope to determine if they were atrophied or not. Ultimately, the pathology report came back positive for moderate to near complete blunting of the villi, positive for intraepithelial lymphocytosis and crypt hyperplasia (consistent with Celiac Sprue). There are certainly other things that can cause duodenitis but in my case I had positive tTg-IgA and DGP-IgG antibody tests from blood draws (very specific to Celiac), so I was already fairly certain based off of those test results I had Celiac disease. I only had to wait 2 weeks for my biopsy results and that felt like forever. It is very hard to be patient when you're waiting for the test results but hopefully you will have some answers soon. Take care.

12 hours ago, Megawisdumb said:

I feel worse today than any day prior to Celiac.  I never had gut pains until I started gluten-free.  I never had significant joint pains and fatigue until I started gluten-free. 

I can relate to you on this on some levels. I was recently diagnosed with Celiac disease via endoscopy/biopsy and I have felt weird things in my body that I had never felt before going gluten free. I already had the joint aches/headaches/fatigue, etc etc but since going gluten free I have had some weird belly pains that I never experienced before (I keep telling myself it is my intestines healing and the inflammation calming down haha; probably not true but meh, maybe). I've been trying my best to eat whole food/single ingredient food only for now to give my gut time to heal. It is difficult and has required more time in the kitchen than I have ever spent prior to this but I know it is going to be worth it when I feel better. I had some rashes off and on throughout the years and thought I was going to get a couple of different exacerbations since going gluten free but it ended up subsiding before it got too bad. I do hope your DH calms down and you start to feel better, sooner than later. Have you had your labs checked for nutritional deficiencies since being diagnosed with Celiac? I have started supplementation to help correct nutritional deficiency as directed by my GI provider and have begun to feel quite a bit better in a relatively quick amount of time (some things are better than others and it still waxes/wanes a lot depending on the day). Take care!