Assuming Celiac Disease is the diagnosis...my story

[cnazrael89]

Hello everyone.

Brand new to the Celiac scene personally and this is my first post here.

I just recently had my tTg-IgA drawn and it came back at 11 U/mL. Standard range 0-3, weak positive 4-10 and 11 or greater positive. 

A little background: My grandfather was diagnosed late in life (in his 70's) with Dermatitis Herpetiformis via skin biopsy. His physician put him on Dapsone and told him to try to avoid gluten. My grandfather wasn't ever told he had to be strictly gluten free for life. He tried to avoid gluten for a period of time, along with the Dapsone and his DH got better. It sounds like things had calmed down and he was "avoiding" gluten so his doctor took him off Dapsone. Turns out my grandfather didn't realize how important it was for him to be strictly gluten free because he was never educated properly. According to my grandmother, (which is where I got all of this information) he was told he did not have Celiac disease but he was just allergic to wheat. After this, my grandfather decided it was too difficult to avoid gluten in his diet and the doctor agreed to just put him back on Dapsone so he could consume gluten without having all of the DH flare-ups. Eventually this downward spiral led to him having emergency surgical exploration ending up with small-bowel resection due to complications with his small intestines (I'm speculating this is Celiac related but not 100% positive). Throughout the next several years his health continued to rapidly deteriorate to the point he became extremely frail and was using a walker. Fast forward to the day before he passed away. He had fallen and sustained a fractured hip. He had surgical repair that night which eventually led to him being admitted to the ICU due to inability to keep his blood pressure stable. That night, despite all of the ICU IV blood pressure support medications they had him on he passed away. Since it was such a sudden and unexplained death they offered my grandmother an autopsy and she agreed. In the report, according to my grandmother, they put that he had a chronic adrenal gland issue which ended up causing his death. I investigated this some online and I found there was a link between Addison's Disease and Celiac Disease. From what it sounds like to me he went into an Addisonian crisis and led to his death. 

I started with that story because I am utterly shocked at how little education my grandfather received regarding his diagnosis of DH and to be told he just has a wheat allergy and needs to avoid gluten if possible. I found this website after I tested on the positive scale for tTg-IgA and started reading post after post absorbing as much information as possible. I came to be tested after my younger brother mentioned to me he had been tested for Celiac disease and had a "weak positive" test result on tTg-IgA and was told to go gluten free immediately after that test. He was not given a diagnosis or recommended GI consultation for EGD biopsy. (I have since shared the information I have learned but he already went gluten free and had resolution to most of his symptoms and is not interested in EGD with biopsy or going back on gluten for that matter!).

I started to put the pieces together after he told me about his "weak positive" result and started thinking about all of the weird symptoms I had experienced off and on throughout my 33 years of life. As a child I oftentimes would throw up for no reason after eating breakfast or have diarrhea before school. My mom always attributed it to nerves about going to school. She also told me that I threw up at school a lot early on and would be sent to the nurses office but again it was attributed to nerves and apparently I would say things like "I'm afraid my parents won't pick me up after school." I had a lot of childhood anxieties and worries that other children didn't have and my parents thought I was just a sensitive child. Eventually, all of the gastric concerns triggered a pediatric GI consultation. I had an EGD and some form of barium study (as I remember the distinct white poo it produced later). I was just a small child at the time this was happening and now that I'm older I asked my mom if she remembers what they were looking for or what they told her and she can't remember any of the test results. She said they thought it was just stress related.

As a child I also developed this strange rash on my hands that presented as small, clear blister-like bumps with a tiny dot in the middle of them and would be on my palms and in between my fingers. The inside of the finger bumps I remember would get kind of raw, itchy and would crust over and the bumps on my palms would just itch a lot. Eventually it just went away and would come and go randomly up until early adulthood. I remember distinctly the last time I had this rash on my hands. I was in California at the beach in my early 20's and I picked up a large bull kelp seaweed and was swinging it around. Later that night I had that rash randomly appear after not having that rash on my hands for years and years.

In my early adult life I had 4 different occasions of kidney stones. I know this is a very common thing to happen to people but also found information that said Celiac individuals have a higher incidence of these due to malabsorption issues (correct me if I'm wrong).

The biggest symptoms I have been experiencing since 2017, after I just finished up a year long divorce. I started having the most intense anal irritation....I mean this was bad. It was itchy, raw, burning and there was blood whenever I would wipe. This went on for a year until 2018 when I started having other symptoms. I went to my primary doctor and told him I am completely wiped out and feeling fatigued to the point it was very noticeable to me (told me it was stress from going through divorce). I had this "fuzzy" feeling like I was walking around kind of dazed all the time. I also reported having joint pain in my thumb, hip, knee and ankle. They weren't all painful at the same time and the pain would sometimes be there and sometimes be fine. I reported that I had developed a red, bumpy and very itchy rash on my arm that eventually went away and then went to my back. After my back rash went away it moved to my abdomen where it stayed for months and was present at the time of my appointment. I also told him about the severe anal discomfort. He said I had anal fissures and gave me some steroid suppositories. He checked labs for rheumatoid arthritis and lupus which were both negative. He also tested my testosterone which was slightly elevated and checked my leutinizing hormone and follicle stimulating hormone, which were both high. Nothing ever came of these symptoms or tests and I kind of just internalized everything and thought this must just be how I am and I am getting a little bit older now. I continued to have these symptoms off and on until the present time just thinking this is the way I was built. I also always wondered what those bright white areas on four of my teeth were (enamel defects!).

My last primary care check up (May 2022) I told the doctor I was feeling really weird and that I felt like the normal everyday things that didn't stress me out before are now stressing me out a lot and getting me down. I told him I was very irritable all of the time for no reason at all. I could have all kinds of great things happening in my life and I was just irritated and moody all of the time (to the point my new wife was noticing a change in character for me and mentioned it). He asked if I wanted to be put on some meds and I told him I didn't want them. I have also been having almost daily minor, annoying headaches almost every single day for several months now.

Fast forward to September 2022 and this is the point I put the pieces together and asked my doctor to be screened for Celiac disease. I was given a formal GI referral after my positive test and I am set to go to that appointment today at 3:00 pm. I am seeing a nurse practitioner for the consult due to long wait time to see a doctor. I was assured the NP will be able to order the EGD and will take my history, etc. I'm very apprehensive about the coming EGD because I'm worried they won't be able to see what they need to see or won't biopsy enough sites to give an actual diagnosis. I guess I'm so worried about that because my tTg-IgA was only an 11 U/mL and was just on the cusp of being positive but still considered positive. If my result was much higher I would be less apprehensive I guess. Technically my tTg-IgA is close to 4 times the upper normal level for my lab. I only had my tTg-IgA drawn and didn't know at the time I asked for testing about all of the other things I should have asked for.

Should I ask for more celiac tests i.e DGP IGA/IGG, total IGA at my GI consultation today or is the tTg-IgA enough since it was positive? Should I ask to be screened for vitamin deficiencies and what are the most important ones to ask for? Is it rude to ask them how many biopsies they take and is it okay to be pushy and tell them I want 4-6 biopsies?? 

Thank you for allowing me to tell my story! Sorry it ended up being so long and I would greatly appreciate any feedback, recommendations, etc. if you have time to get through to the end of my novel!!

Take care.

 

[plumbago]

Might as well get more / as many Celiac blood tests as possible:

tTG-IgA; tTG-IgG; DGP-IgG; DGP-IgA; Total IgA; EMA IgA.

Common vitamin tests for celiac disease patients are B12 and Vitamin D. Sure, you can ask about the number of biopsies. You can also ask how many of these procedures they do or if it is commonly done in their offices, just to give you an idea of how much confidence to have in their knowledge of celiac disease. For most celiac disease tests, you must still be consuming gluten, so don't stop now. If you are not eating gluten, that can impact the tests. You are still young, so the damage may not be as noticeable as it was for me, for example, who was older than you at diagnosis. Hopefully others weigh in today before your appt.

 

Plumbago

[cnazrael89]

9 minutes ago, plumbago said:

Might as well get more / as many Celiac blood tests as possible:

tTG-IgA; tTG-IgG; DGP-IgG; DGP-IgA; Total IgA; EMA IgA.

Common vitamin tests for celiac disease patients are B12 and Vitamin D. Sure, you can ask about the number of biopsies. You can also ask how many of these procedures they do or if it is commonly done in their offices, just to give you an idea of how much confidence to have in their knowledge of celiac disease. For most celiac disease tests, you must still be consuming gluten, so don't stop now. If you are not eating gluten, that can impact the tests. You are still young, so the damage may not be as noticeable as it was for me, for example, who was older than you at diagnosis. Hopefully others weigh in today before your appt.

 

Plumbago

Thank you for your reply! Yes, I am still eating gluten and I have actually picked up on the intake due to realizing I wasn't consuming gluten as consistently as I probably should have been to be getting tests done. For over 2 weeks now I have made sure I have eaten gluten containing foods multiple times per day, every day because I figured they would be doing more testing. I have a list of questions to ask when I go in from reading other people's posts on here and will add the topics you have brought up! Thank you for your insight! I appreciate it!

[trents]

The Mayo clinic guidelines for the pretest gluten challenge is the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks leading up to blood antibody testing and for two weeks leading up to an endoscopy/biopsy in order to ensure valid test results. I certainly would ask the GI doc doing the biopsy how many samples he takes and from where. He/she should be taking at least four samples from both the duodenum and the duodenum bulb. No, this is not rude. It's just being your own advocate. There is too much ignorance in the medical community when it come to celiac disease and it's diagnosis. 

[cnazrael89]

5 minutes ago, trents said:

The Mayo clinic guidelines for the pretest gluten challenge is the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks leading up to blood antibody testing and for two weeks leading up to an endoscopy/biopsy in order to ensure valid test results. I certainly would ask the GI doc doing the biopsy how many samples he takes and from where. He/she should be taking at least four samples from both the duodenum and the duodenum bulb. No, this is not rude. It's just being your own advocate. There is too much ignorance in the medical community when it come to celiac disease and it's diagnosis. 

Thank you, I am setting myself up right then to have the best EGD I can have! I appreciate the support and advice! If they're going to find something in there I want to make it as easy as possible. I keep trying to talk myself out of the probability I have Celiac with the tTg-IgA of only 11 U/mL since it is the very lowest positive per my lab scale. I keep trying to come up with reasons it couldn't be this but also if it is, I just want to know for sure. With a low number on the positive scale there is still a chance of having significant intestinal damage? The number doesn't necessarily matter but the fact it is positive at all does; is that correct?

[trents]

There are some other medical conditions and some medications even that can cause weak positive tTG-IGA scores. But we actually sometimes see the case where tTG-IGA was negative but the biopsy turns out to be positive. The tTG-IGA is far from being a perfect test for celiac disease. It misses 20% of those of white, European decent who actually do have celiac disease (as confirmed by biopsy) and 80% of those from black African lineage. That underscores the importance of getting a full celiac antibody panel done instead of just the tTG-IGA, which is the only test many physicians order. Again, there is woeful ignorance in the medical community at large when it comes to celiac disease. It's slowly improving but still, there is a long way to go. That's why it's so important to go to appointments armed with knowledge and willing to be your own advocate. If the doctors are offended by your questions and suggestions, that is there problem, not yours.

You might also look into genetic testing to see if you have one or both "celiac genes" or some variants of either one. But given your family history, the chances are very good you have at least one of the genes.

[cnazrael89]

Thank you so much for taking time out of your day to read and respond to my post! As far as other causes of an elevated tTg-IgA, I am taking zero prescription medications and as far as I know I don't have any of the common other conditions that raise tTg-IgA. Your response was filled with wonderful information and I'm certainly feeling more prepared going in to my consultation to speak up for myself on what I now know is appropriate further testing given my family history and positive tTg-IgA value. Take care!

[trents]

People's immune systems may respond atypically or eccentrically to a given threat. One-sized diagnostic tools don't fit everyone. One important lab that should be run (but very often isn't) every time someone gets antibody testing done is "total IGA". If total IGA is low it will skew downward the numbers of individual IGA tests such as the tTG-IGA. Here is a primer for antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Some of the IGG antibody tests can pickup celiac disease that is missed by the IGA tests.

Edited September 28, 2022 by trents

[cnazrael89]

So I had my appointment with the Nurse Practitioner at the GI office. I got scheduled for an EGD with biopsies on 10/24. She is not the provider doing the procedure so she couldn't tell me a specific number of biopsies that the doctor will take (but I plan to talk about that before the EGD with the doctor performing the scope). I asked about getting the other celiac labs drawn and getting a CBC, CMP, and some vitamins checked but she wouldn't order any more labs because she said "let's wait and see what the EGD shows and we'll order more labs if we need to." I kind of pressed her on this further and she basically was like "do you want more lab work or the EGD because we're already going to schedule the EGD for you, which is the better diagnostic test." Yikes! I'll just wait for the EGD results and then ask for all the labs to be drawn after the biopsies are resulted I guess. She was not going to budge on the lab work.

[trents]

Well. let me first applaud you for being your own advocate. The NP is correct, however, in that the biopsy is the more reliable dx test. I hope you do follow through on your intentions to ask question about the thoroughness of the biopsy process. Continue to eat regular amounts of gluten until the biopsy is over.

Edited September 29, 2022 by trents

[cnazrael89]

34 minutes ago, trents said:

Well. let me first applaud you for being your own advocate. The NP is correct, however, in that the biopsy is the more reliable dx test. I hope you do follow through on your intentions to ask question about the thoroughness of the biopsy process. Continue to eat regular amounts of gluten until the biopsy is over.

Thank you, I most definitely will continue to eat gluten regularly every day until I have results. Thanks to all of the great advice on this website I felt much better equipped going into my GI, knowing what to ask and what to mostly expect from them. Take care.

[plumbago]

Yikes is right. While I don't totally agree with the NP's decision, it probably won't hurt to wait. Speculating aloud, I wonder if she just wanted to do everything to ensure that the EGD happens and worried that a normal blood test could lead to thoughts of cancellation. If you really want tests before the EGD, you can always order them yourself and pay out of pocket. Otherwise, I would get them scheduled for as soon after the EGD as possible. I say that because if the scope does show damage, the immediate advice is going to be to stop eating gluten.

[cnazrael89]

9 minutes ago, plumbago said:

Yikes is right. While I don't totally agree with the NP's decision, it probably won't hurt to wait. Speculating aloud, I wonder if she just wanted to do everything to ensure that the EGD happens and worried that a normal blood test could lead to thoughts of cancellation. If you really want tests before the EGD, you can always order them yourself and pay out of pocket. Otherwise, I would get them scheduled for as soon after the EGD as possible. I say that because if the scope does show damage, the immediate advice is going to be to stop eating gluten.

I totally thought about the risks of possibly getting more celiac labs drawn prior to the EGD and the labs confusing matters some. I'm ultimately okay with how the visit went and just basing the EGD being scheduled off of the positive tTg-IgA. My plan as of now will be to get the results of the EGD/biopsies and then ask for the rest of lab work. I mean, it is somewhat confusing to me now because if they aren't able to give a clear diagnosis of Celiac based off of the EGD do I just choose to say "I had a positive Celiac blood test" and go off gluten to be on the safe side of things considering the strong family history? I know I could do genetic testing to make sure I at least have the ability to have Celiac and then I could do the other Celiac serology to see if any of that would help give reassurance of a higher probability of Celiac if the EGD is not 100% clear. I've been getting into my head since getting the initial positive lab draw and playing the what if game constantly. I'm a creature of cut and dry facts and have a hard time with uncertainty.  Deep in my gut I have this feeling I have been dealing with this since early in life without drastic symptoms that have waxed and waned throughout the years. So maybe I will be pleasantly surprised by an obvious diagnosis after the biopsies result! I'm certainly not wishing this diagnosis upon myself or take this disease lightly in any sense but I just want it to be diagnosed if I have it and not get missed!

[plumbago]

I think most everyone when faced with a diagnosis of a chronic disease definitely wants it to be super crystal clear, and one thing you'll see on this forum is the agony of doubt when it's not. You're not alone - smiley face.

Not that we should be comparing, but I was older than you at diagnosis, and here are my results:

Ttg-IgA 81 (limit was <7)

gliadin peptide IgG 66 (limit again <7)

gliadin peptide IgA 21 (again <7)

I asked my doc to repeat the tests because if I'm gonna give up pizza and beer for life, I wanted to make sure there were no lab errors! So a month later:

Ttg-IgA 53 (limit was <7)

gliadin peptide IgG 56 (limit again <7)

gliadin peptide IgA 12 (again <7)

Notes from EGD pathology report: Endoscopic biopsy duodenum, mid 2nd portion and bulb - moderate to marked villus blunting with moderate to marked intra epithelial lymphocytosis and marked chronic inflammation of lamina propia (gluten sensitive enteropathy pattern of injury) characteristic for untreated celiac sprue. The body of the esophagus was normal. Distally, there was a sliding hiatal hernia. Gastric mucus lake was clear. The gastric folds were normal. There were no erosiions or ulcers. In the duod. builb nd 2nd duod. no villi were seen. Mulitiple biopises were takn. EGD abnormal duodenal mucosa. Abnormal mucosa was noted throughout the duodenum. Comment 1: The changes are essentially diagnosistic of untreated celiac sprue in the appropriate clinical setting. Rarely other antigens and disease processes can give this pattern of inflammation and repair.

I even met with Alessio Fasano before he left for Massachusetts and as he says, I walked in through the front door. Perhaps you are lucky in that, if the markers are not flashingly obvious, you are nevertheless preventing a lot of damage in the future.

Edited September 29, 2022 by plumbago

[cnazrael89]

14 hours ago, plumbago said:

I think most everyone when faced with a diagnosis of a chronic disease definitely wants it to be super crystal clear, and one thing you'll see on this forum is the agony of doubt when it's not. You're not alone - smiley face.

This is definitely a theme I have been noticing as I've read through a lot of the posts on here! It feels like that unsettling grey area - the unknown. It certainly helps to know It's not just me and has helped to read other's journey through this period of pre-diagnosis. I've felt a lot more at ease now that the EGD is scheduled and I know what to do up until the day I have the procedure; eat, eat, eat gluten... It may be in my head because I'm hypersensitive right now about it but it seriously feels like now that I am making sure to consistently eat a lot more gluten every single day some of the little things I was experiencing before have become a little more apparent. The daily headaches seem to be a little achier, the finger joint aches I've been having seem a little more bothersome, my Rt knee started aching randomly, and the terrible rectal burning/irritation/itching/soreness has been incessant since really focusing on daily gluten consumption...could just be that now I'm associating every single thing to the Celiac possibility. Weird how our minds work.

Well, you're EGD couldn't have been more clear, now could it? Thanks for the reassurance. Maybe I'm just catching it on the earlier side of things and like you said, "preventing a lot of damage in the future." I'd be totally fine with all of that :)

[cnazrael89]

On 9/29/2022 at 4:43 AM, plumbago said:

If you really want tests before the EGD, you can always order them yourself and pay out of pocket. Otherwise, I would get them scheduled for as soon after the EGD as possible. I say that because if the scope does show damage, the immediate advice is going to be to stop eating gluten.

Quick update: I talked to my GI again and they ended up agreeing to order a DGP IgA and total IgA but still not wanting to order any vitamin/mineral testing until a confirmed biopsy. Originally my Ttg-IgA was 11 (standard 0-3) mid September, my total IgA just resulted 144 (standard range 68-408) and my DGP IgG just resulted 94 (standard range 0-19). I got my Vitamin D checked through a "Gen health screen" they do at my hospital and it came back 27 "insufficient" range (standard 30-100). One week until my endoscopy. Ready to start figuring out a gluten free life! Tricky because my 2 year old son has anaphylaxis to dairy and now cutting Gluten containing ingredients feels daunting. Having the back and forth battle of how to go about going gluten free...do we all go gluten free or just me...feels like it would be easiest to go to a gluten free house but also makes me feels selfish at the same time...

[plumbago]

3 hours ago, cnazrael89 said:

feels like it would be easiest to go to a gluten free house but also makes me feels selfish at the same time

I would agree with you on the first part. On the second part, you could think about this: have home gluten free, but son can eat gluten outside the home. Seems like the best of both worlds to me! Nowadays, there's just as much (unhealthy) processed gluten-free food, almost, as gluten-containing food/snacks.

[LCAnacortes]

After I stopped eating gluten, I was still having diarrhea and had to stop dairy too.  It is super common. 

 

[LCAnacortes]

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...

[cnazrael89]

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.

[knitty kitty]

@cnazrael89,

Share this article with your son's pediatrician.

The correct way Celiac Disease diagnosis passes through DGP IgG levels in children

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9275736/

[cnazrael89]

@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!

[knitty kitty]

@cnazrael89, 

Oh, thank you!

I had a rough and bumpy journey to my Celiac diagnosis.  If I can help others on their journey....it makes mine worthwhile.  

We're all going the same direction, so let's go together!  

[cnazrael89]

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.

[plumbago]

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