Recently Diagnosed and Given No Information...

[Barmstrong1]

Hello!

For a bit of background: On November 14th, I had an endoscopy done where they took some biopsies from my duodenum, stomach, and random gastric. Right after they told me they were unable to tell me the results since they were sending the biopsies to be tested. However, they were able to tell me that I had erythematous mucosa which they explained in simple terms is inflammation and some acid imbalance (still not sure what it is). I was prescribed some anti-acid medication and was sent home to wait for the biopsy results. It was a few days later on the 17th when I checked my records myself, through the myhealthrecords app, and the surgical pathology report was uploaded and had the final diagnosis of celiac disease. 

On the report, it explained I had mild chronic inactive gastritis (from the mucosa), and I had "substantial blunting of the villi, increased plasma cells, and acute inflammation". It then said all is conclusive to the diagnosis of celiac disease. On one hand, when I read the report I felt some relief that I finally knew what's been making me feel terrible for most of my life, but on the other, all I could think about was the major changes I would need to start making. 

Flash forward to yesterday, I received a phone call from the doctor's office, and all they said was "You have celiacs, and the way to manage it is through dietary changes." That's it- nothing else... Although I understand doing research is easy now with all the tools and resources online, I still have so many questions and things that I am unsure of. So that's why I joined this group a bit ago! I hope I can maybe get some help from others who are more knowledgeable and experienced than I am, and specifically answer some questions I can't find the answer to. 

Some of my questions right now are:

1. I've read there are different types and levels of celiacs (classical, non-classical, silent, potential, and refractory), but should each one take the same precautions as the other? I think I would fall under just classical, but do I really have to do things like get new cooking utensils, or worry about even cross-contamination crumbs? How strict/cautious do I need to be?

2. A distant family member of mine with celiacs told me they went to this doctor who told them they should eat gluten every once in a while so the body doesn't get used to being completely gluten-free and react severely when gluten is ingested after a long period of time without it. Is this true? Will my reactions get worse if I go completely gluten-free for an extended period of time, and does eating it once in a while avoid that?

3. Could the gastritis be linked to celiacs, or has anyone ever dealt with gastritis as well?

4. What if I unintentionally am eating food that's cross-contaminated every so often, or restaurants make mistakes, will that continuously damage my lining? How do I know my lining is 100% healthy, and do casual slipups create damage?

I know it might sound dramatic, but in a way, I feel really sad or as if I'm mourning how I didn't have to think about food so much before being diagnosed:( I honestly have no one in my close circle with celiac, and with Christmas coming up where I'm going to families houses, I'm almost panicking about what I am going to eat. I really don't want to make a big deal out of it and I especially don't want to be a burden, but I'm starting to feel anxious about eating food that wasn't prepared by me or that I know for a fact doesn't contain gluten. I really just want to heal my stomach and live as healthy as possible to avoid any future complications. 

Again, I'd appreciate any help or input- or even how anyone else deals with holidays or social gatherings:)

[Scott Adams]

Welcome to the forum! I think a big question you left out is, should you continue taking the anti-acid medication, especially if this is a PPI (proton pump inhibitor), which many celiacs are wrongly prescribed before being diagnosed with celiac disease. Such meds can cause nutrient deficiencies in the long term, which doesn't necessarily help with your situation. It would make sense for you to ask your doctor about this.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[RMJ]

The only way to know for sure if your villi have healed is another endoscopy with biopsies.  However, a good surrogate is to look at antibody levels and see if they have returned to normal.  I see in another post that your Tissue Transglutaminase IgA was elevated. Watching my antibody levels told me how strict I have to be with the gluten free diet. I started by avoiding the obvious gluten, and had to get stricter and stricter until all the antibody levels were normal.  

[misslemon]

I felt a lot of these same emotions when i had to go gluten free six months ago. (I haven't been diagnosed with celiac but know I have NCGS or celiac.) For me it was very disorienting and anxiety producing to not be sure what I would be able to eat or be left out of group meals. The good news is that it's gotten much easier and now for me it feels a lot more like normal life and doesn't cause so much stress. It helped to get some homemade meals in the freezer and some snacks so I knew I'd have something to eat if I can home too tired or sick to cook. For Thanksgiving I brought a gluten free casserole and ate that and turkey. I also bring OWYN brand protein shakes, jerky, things like that when I travel. That way I know I at least won't go hungry. I don't know that I have to be as strict as most, but it has gotten easier with time.

[Always-Hungry-Kate]

Welcome to The Club, although I’m sorry for how you are feeling right now.  Please be comforted in knowing that your story is all-too-familiar. 
When you mentioned how you were given almost no information, I got mad all over again when I thought my OWN experience, when I found out — on the morning of October 22, 2023, via the automatic results that were sent to my email account — I had celiac disease.  

The SAME THING happened to me — almost no helpful guidance or information given to me, then.  When I scheduled my first appointment with a gastroenterologist, I demanded answers immediately about how long it may take me to heal, is there anything ELSE that will help with this?  Is my entire intestinal tract loaded with squashed, deformed villi, or just the section in the duodenal area?

Thank goodness for Websites and Forums like this.  Joining social media groups on this topic has also helped greatly.  Since I started the gluten-free diet on October 22 of this year, I have definitely been struggling with it only because I do not understand why I am either starving or nauseous most of the time.   And, believe me, I am eating “good stuff” (nutritious, no-empty-calorie meals/snacks), But maybe I do have to actually eat more in terms of volume.  I’ve never really been a “big eater”, but I feel as though I am eating all day and when it gets close to my bedtime, I always eat something like a 200-calorie gluten-free protein bar or 6 ounces of plain yogurt with fruit or something else “heavy” and yet I wake up starving like I haven’t eaten in days.  And, of course, I’ve gone through all of blood tests, an endoscopy, a CT scan and been to 2 specialists who all tell me, “We can’t find anything wrong with you” — except for the celiac condition, of course.

What I’m finding out is that after decades of eating wheat, rye and barley products, my body may be going through some kind of “withdrawal” from it.  I don’t know how true that is, but I’m also hearing from other celiac patients that this constantly-hungry feeling is extremely common, although I still don’t understand it completely.  Apparently, it will eventually go away, but I wish I knew how much longer it will be that I have to feel like this.

The only other thing I find to be upsetting is when you express to these doctors that you are still not “feeling good“, you are feeling anxious about your new way of eating and living, and you need some advice.  Very often they suggest that you go on an antidepressant!  That’s ridiculous! 

If you and I were in the same room and you were expressing anxiety about upcoming holiday events, worrying about if you will have enough to eat when you’re away from home, I would completely understand and give you the best advice I could about dealing with that.  That is a very valid concern.  One thing I would NEVER tell you is, “Go see a psychiatrist; you’re out of your mind; you’re making yourself sick” . . . imagine, saying that to a fellow “Celiac Sufferer”.  

I have to remind myself, “You are NOT crazy.  You are NOT clinically depressed.  You are going through a major lifestyle-change that will require strength, knowledge and patience to get through it.  It won’t be easy, but you will get through this because you CAN”. 

Take each day at a time; prepare yourself as best you can when you are away from  home (far from your gluten-free foods/snacks) and know that this will take time. 

 

[Barmstrong1]

On 12/8/2023 at 6:51 PM, misslemon said:

I felt a lot of these same emotions when i had to go gluten free six months ago. (I haven't been diagnosed with celiac but know I have NCGS or celiac.) For me it was very disorienting and anxiety producing to not be sure what I would be able to eat or be left out of group meals. The good news is that it's gotten much easier and now for me it feels a lot more like normal life and doesn't cause so much stress. It helped to get some homemade meals in the freezer and some snacks so I knew I'd have something to eat if I can home too tired or sick to cook. For Thanksgiving I brought a gluten free casserole and ate that and turkey. I also bring OWYN brand protein shakes, jerky, things like that when I travel. That way I know I at least won't go hungry. I don't know that I have to be as strict as most, but it has gotten easier with time.

Thank you! I'm sorry you went through some anxiety related to going gluten-free as well, but it's nice to hear that it gets better with time. Your advice on bringing snacks/side dishes to events is a great idea and I'll definitely do so with Xmas coming up:)

[Barmstrong1]

On 12/9/2023 at 12:35 PM, Always-Hungry-Kate said:

Welcome to The Club, although I’m sorry for how you are feeling right now.  Please be comforted in knowing that your story is all-too-familiar. 
When you mentioned how you were given almost no information, I got mad all over again when I thought my OWN experience, when I found out — on the morning of October 22, 2023, via the automatic results that were sent to my email account — I had celiac disease.  

The SAME THING happened to me — almost no helpful guidance or information given to me, then.  When I scheduled my first appointment with a gastroenterologist, I demanded answers immediately about how long it may take me to heal, is there anything ELSE that will help with this?  Is my entire intestinal tract loaded with squashed, deformed villi, or just the section in the duodenal area?

Thank goodness for Websites and Forums like this.  Joining social media groups on this topic has also helped greatly.  Since I started the gluten-free diet on October 22 of this year, I have definitely been struggling with it only because I do not understand why I am either starving or nauseous most of the time.   And, believe me, I am eating “good stuff” (nutritious, no-empty-calorie meals/snacks), But maybe I do have to actually eat more in terms of volume.  I’ve never really been a “big eater”, but I feel as though I am eating all day and when it gets close to my bedtime, I always eat something like a 200-calorie gluten-free protein bar or 6 ounces of plain yogurt with fruit or something else “heavy” and yet I wake up starving like I haven’t eaten in days.  And, of course, I’ve gone through all of blood tests, an endoscopy, a CT scan and been to 2 specialists who all tell me, “We can’t find anything wrong with you” — except for the celiac condition, of course.

What I’m finding out is that after decades of eating wheat, rye and barley products, my body may be going through some kind of “withdrawal” from it.  I don’t know how true that is, but I’m also hearing from other celiac patients that this constantly-hungry feeling is extremely common, although I still don’t understand it completely.  Apparently, it will eventually go away, but I wish I knew how much longer it will be that I have to feel like this.

The only other thing I find to be upsetting is when you express to these doctors that you are still not “feeling good“, you are feeling anxious about your new way of eating and living, and you need some advice.  Very often they suggest that you go on an antidepressant!  That’s ridiculous! 

If you and I were in the same room and you were expressing anxiety about upcoming holiday events, worrying about if you will have enough to eat when you’re away from home, I would completely understand and give you the best advice I could about dealing with that.  That is a very valid concern.  One thing I would NEVER tell you is, “Go see a psychiatrist; you’re out of your mind; you’re making yourself sick” . . . imagine, saying that to a fellow “Celiac Sufferer”.  

I have to remind myself, “You are NOT crazy.  You are NOT clinically depressed.  You are going through a major lifestyle-change that will require strength, knowledge and patience to get through it.  It won’t be easy, but you will get through this because you CAN”. 

Take each day at a time; prepare yourself as best you can when you are away from  home (far from your gluten-free foods/snacks) and know that this will take time. 

 

Thank you for your insights! It seems to be a common occurrence of not receiving much information from doctors/medical personnel... However, posts like this help more than I can express- both personally and informationally:)