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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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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.

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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!

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

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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!

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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!

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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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Sorry 2. Should be tissue Transglutaminase IGA

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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
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