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Cderbogh

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Cderbogh Rookie
Cderbogh
Posted

Hello! I'm so glad to have found this site...I swear I'm learning more from you guys than I do from my doctor! I guess I'll start by sharing my story. I'm 24 years old and was diagnosed with autoimmune hypothyroidism when I was 16. After I started taking thyroid medicine, I started to feel better and didn't really try to understand my condition much further than the medication (I was a junior in high school and it all kind of went over my head). A year later I started to have some rectal bleeding. The doctors told me I was fine. 2 years later I started to suffer from a terrible itchy rash on my scalp, back of my neck, buttocks, back and arms. The doctors have prescribed topical steroid creams and most of them help but don't get rid of it completely. Around the same time I started having anxiety problems. I had several panic attacks but never wanted to go on medication. i also started to have insomnia. The doctors thought my thyroid levels were off but I have them checked every 4 months or so and they are always normal or even low. In fact, Ive had dosage increases. About 2 years ago I started sleeping A LOT. I was always exhausted and would go to sleep at 7pm wake up at 7am and still be tired all day. After a few months of this cycle my insomnia kicked in. My body was still exhausted but I could not fall asleep (probably due to anxiety as well). I also started having stomach problems. I seemed to have to use the bathroom after every meal. Fast forward to present day and I'm still experiencing fatigue, insomnia, anxiety, skin rash, rectal bleeding (despite treating for 'hemhorroids' on multiple occasions), stomach problems and the list goes on really. I was finally alerted to celiac disease and it seemed that everything started to fall into place! I went to my endocrinologist and she ordered a celiac blood test along with several other autoimmune disorder blood tests. However, my bloodwork was all normal. The celiac test results were negative. I have Kaiser Permanente and I'm not entirely sure which celiac antibody tests they use but I do know that my doctor never contacted me I'm sure because everything was normal. But I'm almost positive my skin rash is Dermatitis Herpetiformis. Should I push for the skin biopsy and even the small intestine biopsy? Or should I just go gluten free and see if it helps me feel better?

Thanks for all your help!

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kareng Grand Master
kareng
Posted

Get a copy of your lab results. They didn't call you because they were running late that day, the results didn't get to the doc to review, eat.

rosetapper23 Explorer
rosetapper23
Posted

I had Kaiser since the age of 14, and they missed my celiac diagnosis entirely! When I looked into the matter after finding out that I had celiac at the age of 47 (had to figure it out for myself...and the Kaiser gastro apologized profusely on behalf of all Kaiser doctors), I was told that Kaiser had NO doctors at the time who were very knowledgeable of celiac disease. I left and went to Blue Shield....and I'm much happier now. It could be that your doctor did not order the full celiac panel--in fact, I'm pretty sure he didn't. They truly do NOT know what they're doing with regard to celiac. I know I'm not supposed to diss a company....but a gastro who was the one expert at Kaiser was the person I contacted. He had moved on to private practice, but he informed me that I would find no help at Kaiser whatsoever...and he was right.

Follow through and ask if the full celiac panel was done. If the doctor has no idea what you're talking about, ask to be referred to a gastroenterologist. Alternatively, you can ask to be referred to a dermatologist and request a biopsy. However, the Kaiser dermatologists don't know that they need to biopsy the clear skin NEXT to a lesion and not the lesion itself. Good luck winning that argument! I have DH, and my skin is terribly scarred because the Kaiser dermatologists (lots of them) told me I just had a bad case of acne and treated it as such. If all fails, simply begin following a gluten-free diet, because you will probably regain your health if you do. And please continue to ask questions on this Forum--you'll learn a lot!

mushroom Proficient
mushroom
Posted

I believe that normally at Kaiser the only test they routinely run is the tTG IgA.

Cderbogh Rookie
Cderbogh
Posted
  • Author

Thank you for your input! I am scared to see the dermatologist and I do feel that my doctors so far have not been very knowledgable about Celiac. I have seen a gastroenterologist with Kaiser about a year ago regarding my rectal bleeding. He performed a sigmoidoscopy and told me we were going to treat it like internal hemorrhoids because I'm so young and he didn't want to believe there was anything more seriously wrong. I thought it was kind of ridiculous. I wish there was a Celiac Specialist i could see within Kaiser! I'm starting to feel like none of them believe me :( I'm going to try to contact my doctor tomorrow and hopefully she can refer me to a better gastro. Thanks for all the help!

megsybeth Enthusiast
megsybeth
Posted

Hi Cderbogh, You sound like you really have been suffering so I kind of hope you have celiac so you can get some help. I used to have Kaiser and I could look at my labs and my son's labs online at the patient site. Have you tried that? Makes it easier than the back and forth with nurses on the phone, faxes, etc.. I don't think Kaiser is any better or any worse than the average medical group but that means lots of missed celiac IMHO! My son was textbook celiac and I was told at Kaiser that he was tested and didn't have it. Turns out they only did a stool fat test. But you know I went to a PPO and the "specialist" I saw did the same thing.

No matter what, push for all the tests. And post here. They are better than doctors sometimes!

Cderbogh Rookie
Cderbogh
Posted
  • Author

So I requested my results to find out exactly which tests the doctor ordered, and there were 3

1. IGA

2. Tissue Transglutaminase

3. Gliadin IGA

However I did not receive numbers....just 'negative'. Is this the full celiac panel? I emailed my doctor and asked if there was a chance it was a false negative and she said yes and to follow up with a GI. I'm sick of feeling sick! Part of me wants to just eliminate gluten and see how I feel. I'm ready for this itchy rash to go away too!

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Cderbogh Rookie
Cderbogh
Posted
  • Author

Sorry 2. Should be tissue Transglutaminase IGA

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  • Posts

    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      Weak positive blood test and marsh type 1

      By trents · Posted

      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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