Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Another Boring Plea! But I Am So Upset!
0

11 posts in this topic

Hi lovely people, I have been a member of this forum for a while now, but I have never really introduced myself!! I have had symptoms of various kinds nearly all my life, but I thought that this just how I am! Being constantly tired, etc is part of my personality.

I am in Scotland and here the knowledge about celiac is not much better as in many places and I find myself in a most ridiculous situation as I still don't know whether I am officially celiac or not! Here the system works in that one sees a different person every time one goes to the GI specialist and even at times one has to go to the GP to get blood results, have a chat, etc.... In my case there seems to be a discrepancy of opinion... As I had been gluten free for two months prior to this diagnosis journey- I was told to go on a gluten challenge, there was also disagreement as to how long, depending on who I saw.... But I settled for 8 weeks and went for my endoscopy appointment bare being able to stand on my feet as I had a terrible reaction to gluten-I also get DH and I had an enormous concentration of blisters around my mouth and inside... And a small concentration at the back of my legs.... Th endoscopist was very alarmed at my general state! Together with the nurses , he saw mild scallopings in my intestine and said: your symptoms together with what I've seen I am confident that you have celiac- they also did a blood test and took biopsies. Of course, both were negative! I asked which blod test they had performed and I found out that they had done only one, the TTG IgA which sees whether you produce antibodies or not... My GP was adamant, negative blood test no celiac, but if you feel better you can go gluten-free- just cut out wheat, you can still eat barley, etc.... Lol

Letter back from GI specialist, negative biopsy - no evidence of celiac... E funny thing is that I've been a patient for 20 years in the same department as I have ulcerative colitis- it is a well know fact that individuals with certain autoimmune diseases do not produce these IgA antibodies and Erefore it is not surprising my blood was negative as I am deficient ... Signs of deficiency: constant mucosal infections: sinusitis, colds, bladder, etc... Nobody ever looks at your records carefully ... As also the type of colitis I have has been linked to celiac. Nobody ever asks any questions- my grannie had RA and horrendous digestion, my uncle has DH and RA..... How can they make a negative diagnosis based on one single, test without looking at everything else - or what happened to the other three tests? I was told by my endoscopist to go gluten-free ASAP!! And now I have been gluten-free for 2 months, so when I confront my GI in April are they going to tell me to go on another challenge?

I would be very interested to hear from other fellow people who have both ulcerative colitis and celiac?

Thanks so much

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you have DH you have celiac.  Has your DH been diagnosed by a dermatologist? If so there is no doubt you have celiac disease.

0

Share this post


Link to post
Share on other sites

Greetings MGR,

 

Welcome!  I think I have seen your pretty flower around

 

First a question, How do you know you have DH?  Is it officially diagnosed.  I see RW beat me to saying so, but if it is you have celiac!  The sightings during the biopsy would back it up.  I don't know, though how the final outcome of the biopsy was negative.  I would ask the one that did the biopsy again, and make sure you got your own results. 

 

I hope you will soon not have the fatigue companion,

 

D

0

Share this post


Link to post
Share on other sites

Doctors can be really clueless and extremely frustrating.  From what you describe it sure as heck sounds like you either have Celiac or non-Celiac-gluten-intollerance.  Either way, if it were me I would go 100% gluten-free (not just wheat free as that one doc suggested) and see if the symptoms go away.  If they do, there's your answer - and I would never look back.

0

Share this post


Link to post
Share on other sites

As regards to the DH no, it has never been diagnosed formally - I just started getting the burning, yellowish/ red rush that looks like watery bubbles on the back of my legs, sometimes around and inside and around my genital area, other times around my scull since I've had my first daughter- I always assumed it was some sort of odd looking chicken pocks. The mouth rush I've had all my life, but I never linked any of this to celiac until I went on my gluten challenge and all he'll was loose!! One of my first signs when I have had gluten is that the burning bubbles start to appear. Whenever I mention this the doctored don't seem to be interested. However, I don't get it too badly, but the reason I feel it is DH is that I compared it with my uncle's rush and it looks very similar....

With regards to my negative biopsy, I don't know either... I've also had a friend where the endoscopist saw severe damage to her villi and both her biopsy and blood were negative- and she also had ulcerative colitis. Hence, vy original question.

I also get horrendous gastric issues ( foul smelling wind, D, yellow olive oil smelling poo), brain fog and this horrendous tiredness, joint pain... Constant feeling like I'm coming down with flu any minute... In sum, I am a wreck!!

I have now been gluten-free for two months and after years of gastric problems, also with my colitis I realised that the whole of my gut was on fire!! Everything has stopped now.... And it looks like everything is slowly recovering.

0

Share this post


Link to post
Share on other sites




Doctors can be really clueless and extremely frustrating.  From what you describe it sure as heck sounds like you either have Celiac or non-Celiac-gluten-intollerance.  Either way, if it were me I would go 100% gluten-free (not just wheat free as that one doc suggested) and see if the symptoms go away.  If they do, there's your answer - and I would never look back.

I know, it is very clear to me that there is something going on with gluten- I feel soo much better without it, i am still learning as I keep glutening myself accidentally and immediately the symptoms appear...

0

Share this post


Link to post
Share on other sites

Greetings MGR,

 

Welcome!  I think I have seen your pretty flower around

 

First a question, How do you know you have DH?  Is it officially diagnosed.  I see RW beat me to saying so, but if it is you have celiac!  The sightings during the biopsy would back it up.  I don't know, though how the final outcome of the biopsy was negative.  I would ask the one that did the biopsy again, and make sure you got your own results. 

 

I hope you will soon not have the fatigue companion,

 

D

Thanks to the flower compliments, my daughter made it for me.... Unfortunately, how the system works in Scotland, it is highly unlikely I will meet this endoscopist again as one never meets the same person twice, sometimes it is a good thing but at other times it is not... I will just have to nag the one I get the next time..

0

Share this post


Link to post
Share on other sites

From what I have read, a lot of folks who have DH get negative results on the biopsy. If you feel you absolutely must have a diagnosis, you should get a skin biopsy. They need to take the sample on CLEAR skin right next to an ACTIVE lesion.

 

You also said it looks like your uncle's rash. Has HE been diagnosed with DH? Because DH DOES mean celiac, and celiac runs in families. If he has it, odds are you do too based on family history and your symptoms.

 

If you don't care whether you have an official diagnosis, just go gluten-free. I'm sure you have read the Newbie 101 thread already, but review it and if you have any questions, ask away. Also, go to the DH section. You will get a wealth of good information there.

0

Share this post


Link to post
Share on other sites

From what I have read, a lot of folks who have DH get negative results on the biopsy. If you feel you absolutely must have a diagnosis, you should get a skin biopsy. They need to take the sample on CLEAR skin right next to an ACTIVE lesion.

You also said it looks like your uncle's rash. Has HE been diagnosed with DH? Because DH DOES mean celiac, and celiac runs in families. If he has it, odds are you do too based on family history and your symptoms.

If you don't care whether you have an official diagnosis, just go gluten-free. I'm sure you have read the Newbie 101 thread already, but review it and if you have any questions, ask away. Also, go to the DH section. You will get a wealth of good information there.

Thanks, very much for the info, I thought I had also read something about negative results for individuals with DH, but wasn't certain... Yes, my uncle has been diagnosed- I don't think I will have a biopsy because I would have to eat gluten for them to appear .... I've already done one gluten challenge, I am not doing a second one! I will just wait for the day they develop better methods for diagnosis....

F

0

Share this post


Link to post
Share on other sites

Hi-

Here are some links on DH for your docs, if you care to educate them...or for your Uncle and other family members.

 

http://www.cureceliacdisease.org/archives/faq/how-is-dermatitis-herpetiformis-dh-diagnosed

This one states that an intestinal biopsy is unnecessary if DH is confirmed with biopsy.

 

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh

This one states that only about 40% of people with DH test positive with the blood test.

 

Gluten Challenge research:

layman link:http://www.celiaccentral.org/research-news/researchers-now-say-gluten-challenge-can-be-modified-8149/

medical link:http://www.medscape.com/viewarticle/805775

 

According to the info above, your docs put you through a lot of unnecessary pain with an 8 week gluten challenge.  The above links both reference the same research outlined in the medical link, which say 2 weeks of gluten and then testing at 4 weeks gives the best results and you need not drown yourself in gluten in order to get results.  However, the research used only diagnosed celiacs and only 75% were "re-diagnosed" after the challenge.  It's just not very effective.  I'm glad to hear you say you're not doing it again!

 

Best of luck and happy healing to you!!

Shellie

0

Share this post


Link to post
Share on other sites

Oh, I am so grateful you all of you who took the time to answer my plea, this would explain a lot, Shellie.. As I mentioned above, the endoscopist saw scallopings ( even though mild, but they are still there) .... I will have to make a fuss about my skin rash the next time I see the doctor. In the meantime I feel soo much better gluten free.

Because I keep glutening myself accidentally with foods I think are gluten free or stupidly thinking I will be fine...., I have now been 5 days on an exclusion diet- paleo style- but only having protein based foods at the moment. I read somewhere on this forum how great is was (I think it was either in a post by bartful or w8atdave...). I will introduce other foods gradually after this. But today was the first time I thought " I feel like climbing Mount Kilimanjaro!" At last, tummy not on fire, UC quiet, joints sore but bearable... This is all thanks to this forum- where I have found people with similar pleas to mine, all learning together, thanks to all of you for sharing your stories!

I am extremely fortunate my family is very supportive and I loooove cooking- but I now have a big sign on my kitchen cupboard saying ALWAYS READ THE LABEL!!

Love to all of you, ( you can tell I am a sixtie's child....)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,634
    • Total Posts
      918,415
  • Topics

  • Posts

    • amalgam dental fillings - remove or not?
      My friend, I'm sorry to hear of your pain. I don't know if mercury is related, but I will give you my brief experience. I went through so many health issues, medications, and dr's and nobody could find anything wrong with me, but I knew something was wrong. I've been through many doctors, shots, pills, etc and nothing helped. For me it all came down to gluten. I had blood tests that shown the antibodies and the endoscopy that proved I had celiac, which I don't think is needed. If your body makes the antibodies I can't help to believe you have it. Anyway, long story short. If you are sick, you are sick and if a doctor can't find the reason, move on to a new doctor. Celiac, at least for me was simple. Stop eating gluten and every other health problem goes away. I have 30 + year old amalgam fillings and I feel amazing as long as I don't put anything in my mouth that isn't naturally gluten free, which means I only eat meat and vegetables. Our bodies are all different. I guess my only advice to you is if you're sick, your sick. Nobody lives inside your body but you and you know best if you feel better. Don't be afraid to stand up for yourself. 
    • healthy bread recipe?
      Ok thank you for the input! I am happy to hear what you think about her biopsy. Her GI is actually getting a second opinion from the celiac specialist. Our appointment is in a week. I have always thought she had celiac too. I asked them to do a biopsy years ago and they did but it was normal. She has more neurological symptoms than GI. She has headache and POTS. But she was reacting to all kinds of foods all of the sudden a few months ago. The low histamine diet really helped and she tolerates more foods now. I make almost everything from scratch, there is no gluten anywhere in the house and I don't use gums because she and I react to them. Breakfast is the hardest. Eggs are high histamine, she can't have oats, can't have fermented foods (yogurt), Breakfast is a nightmare. Many fruits and veggies are high histamine. She eats the ones she can tolerate. That's why I was asking about breads. What do you eat for breakfast? Are flax seeds safe or are they like oats? I can't find any flax seeds that say certified gluten free.
    • Could this be celiac or is it really just IBS?
      Hi! So I've never posted in a medical forum but y'all seem super helpful so I figured I'd throw this out there! Sorry if this is long lol. Basically, I'm a 22 year old who has stomach problems for as long as I can remember and it's recently gotten worse. I remember having bad stomach aches and diarrhea off and on since I was little. I finally told my parents and saw a GI in high school who took an xray, said it was IBS, and told me to eat more fiber. Around the same time I was feeling weak all the time and I was having what kinda felt like panic attack symptoms without the actual psychological panic. It kind of felt like a hot flash or too much adrenaline? I just kept telling the doctors that I felt "off". I was also diagnosed with atrial flutter, sinus tach, and asthma for no apparent reason, and I just felt like crap in general some days with no explanation.  I leaned to deal with my stomach problems because everything seemed to come and go. Oddly enough when I went away to college it was a little better for my first year or two. Fast forward to about a year ago, and it started getting more consistent so I went to a new GI. She ordered an ultrasound of my abdomen and from there I actually found out that I had a poorly functioning gallbladder (without stones). I had that taken out in November and have not felt any better since. What's weird is that I never had what I would consider "gallbladder pain", as there really isn't a particular spot that hurts every time. Also I want to add that I am a super levelheaded person, so my doctor telling me it's IBS and to cut stress and see if it helps makes me roll my eyes. This is often how my diarrhea starts off these days: I'll feel bad hot flashes or just "off" and foggy for no reason, then hear the gurgles, get pain, and then diarrhea. Most of the time I feel better after that; sometimes I don't. But I think it's weird that I often feel fluish before my stomach even starts hurting.  Basically I just have all these weird vague symptoms that don't seem related and have been coming and going since at least high school. My current GI doc ordered IGA and IGG tests last summer which came back negative. She also did a colonoscopy a few weeks ago and that was negative too. Now she wants to do a small bowel xray with barium.  Here are my main symptoms: diarrhea 2-6 x a day (it ranges from just loose stools to full-on watery)  severe bloating to the point I look pregnant weird hot flashes that seem correlated to my stomach problems headaches had my gallbladder taken out even though I'm 22 and normal weight short stature (4' 10") nausea bad eczema   Does this really seem like IBS or could my blood results be wrong? My doctor seems to think she's thoroughly tested me for celiac. Would the small intestine xray show any of that? Thanks in advance!!!    
    • Diagnosis and Test Results
      I have been struggling with  symptoms for over a year and had lots of other testing done by my GI.  She did the celiac disease blood test a few weeks ago.  It came back positive for the two genetic markers but my antibodies were negative.  I received the results by phone from the (stupid) nurse who only relayed to me that "your tests showed that you are positive for Celiacs Disease.  you need to go on a gluten free diet and follow up in a few months".  I was so surprised by what she said it didn't even occur to me to call the doctor directly so I took it upon myself to research the disease and going on a strict  gluten free diet.  The first two weeks were horrible!  EVERYTHING I ate gave me diarrhea.  After two weeks, I started to feel better but anytime I inadvertently ate gluten by accident or was cross contaminated, I had horrible diarrhea again.  I spoke with my GI doctor today (I work at the hospital where she works) and she explained the blood results better to me.  (I still haven't expressed my anger about the nurse to her yet...but I will!) It doesn't make sense to me that I have the gene, have been experiencing IMO full blown symptoms (significant weight loss, malnourished, diarrhea, migraines, increased depression/anxiety, etc) but my antibody test was negative.  Could it be lab error?  I asked about an endoscopy and she said we could do it but it still may not confirm the disease.  I've also researched IBS and I don't seem to match up with those symptoms. Part of me wants to know if I have a gluten intolerance or the actual disease.  Either way I'll continue to follow the gluten-free diet but I think it's important to know if I have an autoimmune disease correct?  Or does it? Just looking for some guidance...
    • healthy bread recipe?
      Absolutely, absolutely, absolutely!!!!!!! Your doctor seems to think all her villi have to be completely wiped out for her to be celiac. Like cyclinglady says.... get the records & get a second opinion. BTW, I happen to agree with all the rest she said too but I just wanted to emphasize the second opinion part.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,725
    • Most Online
      1,763

    Newest Member
    bitsunderground
    Joined