Is This A Huge Issue?

[Waitingindreams]

Thanks for all of the feedback! Stephanie, I understand what you are saying completely, but it does say on my records officially that I do have celiac disease, despite not having the biopsy done. As soon as the results came in he called me and told me to immediately go on the gluten free diet, and he had me come in again in a couple of weeks to check up on me. At the time of diagnosis, I barely knew what celiac disease was, so I had no idea a biopsy was usually needed.

 

Anyway...just in case anyone is curious, I did get a copy of my records. Here are the results (from June of 2013, I haven't been rechecked yet):

 

[GottaSki]

I admit that I haven't read this entire thread...but will tell you this. I am one of those that has not improved with strict gluten-free along with all attempts to make other adjustments.

If I had not had that initial endo, along with each follow up...I would never have found the cause of my continued problems or ruled out refractory celiac.

Endoscopy remains a valuable tool.

[Waitingindreams]

Thank you for your input!

 

My question really was not whether or not a biopsy was important for those newly diagnosed by a blood test, or those trying to get a diagnosis in general. I was diagnosed by a blood test over a year now - and I was just wondering if it was really that big of a deal that I never had a biopsy. My doctor never mentioned anything about it, I didn't even know anything about it until I joined this forum months later. I don't want to do a gluten challenge again, I think it would be ridiculous to. It does say on my records that I have been officially diagnosed with celiac disease. It is really too late for me now to go back and do everything, but I am not debating that others should not do it. I mentioned in the thread that I know someone else in my state that was diagnosed, and he only had to get the blood test too. Maybe my state just accepts blood tests as a complete diagnosis? Once I joined this forum and read about endoscopies and etc, I started getting paranoid that my insides looked like a horror show. I seem to tolerate dairy a lot better when I do eat it, though...so I take it as my villi are healing (I'm lactose intolerant)

 

As for not healing completely with gluten free diet, I'm in the same boat. I felt much better in the first few months, until things settled down. I found I had to omit a lot more foods. Since starting the low histamine diet, I've basically gotten rid of all of my seasonal allergies. And they were severe. I needed to take my Allegra just to function daily. I carry an epi-pen, was prescribed an inhaler, and my doctor wanted me to come in for regular shots as well. It seemed like I was having allergic reactions to everything I ate. Now I barely take my Allegra and I'm fine. It's fall! Normally I would be a mess. And my gut issues have gotten much better since eliminating soy, dairy, legumes, and grains. Phew. Can't wait to reintroduce foods eventually...

[SMRI]

With numbers that high on the blood tests there is no reason to "confirm" a diagnosis with an endoscope.  If you were 22 out of a high of 20 and all of your other tests were in the normal range, yes, I'd get a scope but with numbers over 100, nope.

[GottaSki]

With high celiac antibody numbers an endoscopy is not necessary for diagnosis.

I hope you are able to add foods back soon...I understand your dietary constraints well.

[Waitingindreams]

Thank you! I hope I am too. I seem to be tolerating some foods that are high in histamine again, such as sunflower oil, almond butter, raspberries, etc. For awhile I could not eat almond butter at all....and the chips I normally ate (that are cooked in sunflower oil) started making my throat itch. When I last tried them, no reaction. So the low histamine diet is definitely working! I think a lot of my ongoing gut issues are stemming from my candida overgrowth. No matter what I do, that doesn't seem to want to budge. It really is exhausting. I can't wait until I'm feeling close to 100% and i can get all of my tests redone to check my progress.  

 

How about you, are you feeling any better?

[icelandgirl]

I totally understand where you are coming from!  I was diagnosed the same way...blood only...no mention of endoscopy until I got on this site and by then I wouldn't do a gluten challenge.  I also improved a lot in the first few months and then have had some setbacks.  I'm still trying to figure out.  The only thing that bothers me sometimes is...what if there's something else wrong that they would have seen with an endoscopy...that thought comes up when I'm having a bad day for sure.  I've also given up dairy, soy and legumes.  I've done low histamine as well.  I've not done grain free yet.  I still have rice.  I'm considering cutting that out for a time and seeing how I feel.  

 

Which elimination do you feel like helped you the most?  It's tough cutting so much because I've continued to lose weight and I have a hard time getting in enough calories with just meat, fruit and veggies.

 

Anyway...just wanted you to know that I'm in the same boat as you...I keep hanging in there.  You do the same...(((hugs)))!!

[Waitingindreams]

Thank you for your input! And your support! (hugs!) 

 

I feel the same way. Once I joined this forum and started reading about endoscopies and biposies and everything, I was really scared about what my villi/insides could possibly look like. I mean, I was lactose intolerant for 3 years before even being diagnosed, did that mean I was past the point of being able to heal? So I was pretty paranoid...so much so that I had to post a forum about it to get some peace of mind. I have to just keep plugging forward and pay attention to my body's reactions to foods. I also use all natural/gluten free hair/skin products as well. That helped tremendously with my scalp issues. 

 

As for elimination diet that helped me the most, that's tough! Giving up yeast, soy, dairy, and legumes all helped out equally. I saw a major decrease in gas, bloating, and diarrhea. I saw no improvements in other areas, though, such as my skin. 

 

Going on a low histamine diet seemed to completely turn me into a different person. I once had allergies so bad I really could not function, and I am not exaggerating. It was like always having a bad head cold. I relied heavily on my Allegra for relief. There were certain foods that would give me an itchy throat/minor anaphylactic reaction. One time I even had a severe allergic reaction to a candle! To be safe, I still carry Allegra, benadryl, and my epi-pen with me... but *knock on wood* I don't seem to need them anymore. It was getting really scary...foods that I had eaten for years were suddenly making my throat itch. It didn't seem normal. I thought maybe the candida was fighting back. 

 

It's fall. My allergies should be out of control right now...and they're not. I rarely take my Allegra. I might take it once a week, if that...when in the past I would wake up feeling completely sick until I took it. In fact, my allergies got so bad (before I was diagnosed with celiac disease) that my Allegra actually stopped working. That is what prompted me to go to the allergist in the first place, and that is when I got all of my tests done and found out I was "allergic" to peanuts, soy, hazelnuts, etc..all foods I ate all the time, and all foods that just happen to be high in histamine. Hmm. When I am 100% healed, I want to go back to the allergist and have all of my tests redone.

 

So to answer your question, definitely the low histamine diet. My allergies were unbelievably severe, and it just didn't make sense. It was beyond the itchy eyes, sneezing and coughing, it was also transferring into the food I ate. The low histamine diet really changed everything around, and I will continue to watch histamine levels until my gut is fully healed. Even then, I will be careful when reintroducing foods that are higher in histamine. 

 

Good luck with everything! I have also joined a candida forum, and i am now thinking I might need to be tested for H.pylori. I know I have low levels of stomach acid, due to my GERD from my hiatal hernia. I also have skin issues, that it might be causing. Does it ever end? 

[icelandgirl]

I was diagnosed with h. Pylori at the same time as celiac. Fun! Anyway, treatment was a combination of 2 antibiotics, a PPI and Pepto. Then after 6 weeks I had to take in a sample to see if it had been eradicated. Unfortunately, my Dr's office didn't follow protocol and I ended up having to bring in a second sample. So gross. Anyway...it was eradicated.

I also have terrible allergies. I've been on Allegra year round for many years. I finally had allergy testing done and was a 4+ on everything they tested me for. I'm currently doing allergy shots.

Have you been able to get rid of all D and bloating with your elimination diet? I still have D 4-5 times a month and still get bloated and burpy. Not sure what to try next. Maybe grain free? Who knows!

[Waitingindreams]

OI! Well at least that is all taken care of! 

 

I rarely have 'd' now, but my stool is much softer, usually. Usually solid. It varies. Sometimes I get constipated still. I'm not eating a lot because my diet is so strict. I need to slowly reintroduce food though, to not overdo it. The bloating comes and goes...but I also have a hernia and candida, so who knows why I am bloated. It did go down significantly after eliminating some of those foods, but I definitely do still have bloating issues. I have gas issues as well. The candida forum offered some advice, such as supplementing with HCL to bring my stomach acid up. That could be contributing to the bloating as well! Ugh! It's never ending.

 

As for going grain free, it's helped me. I am on a super strict version of the SCD diet, which is completely grain free. It also allows some dairy, but I am dairy free for now. Try it and see how you feel! I read that it's a good step toward sealing a leaky gut, I guess we'll see. I was also eating WAY too much rice...so arsenic was probably a concern, lol. I mean I love my rice, and yeah. Ate lots of rice and rice products. Once I reintroduce it, I'll just eat it once a week. I tried cauliflower rice and it just wasn't good. 

[icelandgirl]

I just read about SCD...I could try it. I'm a little scared though...no sweet potatoes? I credit them for keeping me alive in recent months. Do you ever feel tired of what you're eating? I do...more chicken...more veggies...etc. I miss dairy way more than any gluten!

[BlessedMommy]

I have struggled with horrible environmental allergies and 1 year ago, I decided to eliminate sugar for a while. (when I say sugar, I'm also referring to honey, agave, maple syrup, etc.) I went from being sick and congested most of the time to being healthy and being able to breathe so much better!

 

Now I use sweeteners very, very sparingly and my allergies are still tons better than they used to be. 

[Waitingindreams]

I always feel tired of what I'm eating! LOL. It is so hard for me not to grab hummus, especially. I lovveee hummus...but no chick peas are allowed on the SCD diet :'( But what keeps me going is the prospect of having a cheat day once a week, once my gut is healed. (Of course, within reason...obviously it will still have to be gluten free, and I will never add certain things back into my diet, such as soda, etc etc) But, my boyfriend grills me vegetables and chicken a lot and it's really good. I'm telling you, if you're having trouble eating vegetables..grill them. They taste so much better grilled than steamed. Don't bother with a grill basket. Make foil packets, slide the vegetables in with some olive oil and salt (and pepper if you can tolerate it) and grill them. I swear, so good. And easy to digest...they come out kind of mushy. And chicken comes out great, even if you only season it with olive oil and salt. 

 

It is very difficult. And I am hungry a lot of the time, but once I am off the low histamine diet, following the SCD diet will be easier. In fact, if I didn't have candida to worry about...the SCD diet would be fine for awhile! It lets you eat cheese! Certain kinds, of course. And I believe the only one it lets you eat sparingly is cheddar. Still! Cheese! I miss dairy too. 

 

And Blessedmommy, that's great! I avoid all sugars too (mainly because of candida) except for berries and occasionally baked apples. I found a recipe I can eat that my boyfriend likes, too! It's just apples, butter and cinnamon! 

[Cara in Boston]

You already have enough information (positive blood test, positive response to diet) to know you have celiac Disease.  If your doctor agrees, have it put "officially" in your medical file. This will only be important if you are hospitalized and require a special diet (or enter the military or get put in prison?)  Other than that, you are 100% in control of what you eat so you don't need anything "official"

 

I did push for further testing for my child because he has years of school, summer camps, college dorms, etc. that might require a doctors diagnosis in order to accommodate a special diet request.

 

Your first degree relatives should all be tested.  Any future kids should be tested every couple of years, regardless of symptoms.  An "official" diagnosis could be helpful here, in case doctors don't see a "need" to test your children.

 

Also keep in mind that you could do the challenge, have the endoscopy, and it could still be negative.  This would not rule out Celiac . . . it would only mean that damage was not found.  A biopsy can confirm it, but not rule it out.

[egger]

I swallowed the camera capsule instead of doing the endoscopy. Although it does not show inflammation like an endoscopy biopsy, it still shows damage to your intestines that you get from celiac disease. I know my damage took a while to heal and is still healing. So, perhaps a camera capsule will still show damage although you recently started a gluten-free diet? 

[Waitingindreams]

Cara in Boston - Good points! It does say I am officially diagnosed in my records, so I don't need to worry about that! But that is good to know. I've talked to my parents and sister about getting tested, all 3 refuse. None of them have health issues to my extent, but they all have asthma...my mom has candida, my dad's allergies are getting worse and worse, etc etc. I can't make them do anything they want to do. Perhaps if my doctor encouraged them to get tested they would (since my parents go to the same doctor I do) but he hasn't. He is not a GI, just a PCP, so he doesn't really know too much about celiac disease.I think they're being ridiculous, it's a simple blood test. But I can't make them do it. And I don't have kids, and I'm not planning to have kids - but if I ever do I will be very diligent about it, of course. I don't want them going through what I did growing up.

 

Egger - Yeah? How was that? I wanted to have that done instead of a traditional endoscopy, but I of course didn't want to start eating gluten again. My PCP was the one who diagnosed me and he doesn't think it's necessary regardless. I plan on going to see a GI/celiac specialist, and I will talk this over with him. It also depends on if it will be covered by health insurance, of course...but it does seem preferable over the standard method! I did not start a gluten free diet all that recently, I was diagnosed over a year ago now! That's why I was so against doing any sort of gluten challenge. I've come too far.

[egger]

The camera capsule test was no problem except for using laxatives to empty yourself the day before as with a colonoscopy. I have also been on a gluten-free diet for a year, but a recent blood test still shows inflammation in my body. SO, I am thinking inflammation or damage in my intestines still might be there. I was thinking about doing a follow-up camera capsule test. I had it done for free through patient financial assistance program at hospital since my limited insurance did not cover it. You need to make below a certain income to qualify for the program.

[Waitingindreams]

Oh no :\ I'm sorry to hear that. Have you figured out why you still have inflammation? Are you getting cross contamination somewhere, etc?

[SMRI]

Just keep in mind that there is a strong undercurrent in the Celiac community as a whole that if you have not had a positive endoscope you aren't really Celiac.  Just ignore that--it's old thinking.  You see some of that here, but not often.  I would just accept the diagnosis and move on and forget the endoscope unless you have gone a year or so without any improvement with your diet.

[cdawes]

Having a positive blood test is diagnosis enough for many physicians. If you have been on a gluten free diet and have a scope, likely your results will come back negative. This does not mean you don't have Celiac. In order for the blood tests and the biopsies to show positive results you need to be consuming gluten. 

 

If you have had positive blood work and are consuming a gluten free diet and feeling better than stick with it. The only reason following this, the need or want for a scope would be to make sure things look okay inside. Just like people with family histories for certain diseases have more frequent screenings, scopes and follow up just ensure that things look good as there is an increased risk of other illnesses and cancers that have been associated with celiac disease. 

 

So if you want to have a scope for diagnosis be sure you are consuming gluten. if you want it for general health screening for other potential illnesses that up to you and your physician. 

 

I work in an emergency setting and have chatted with many physicians following my diagnosis.  I am choosing to see a gastroenterologist purely for screening for bowel health, not to further prove my diagnosis. 

 

Hope this helps