Another Boring Plea! But I Am So Upset!

[MGR]

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

[ravenwoodglass]

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.

[1desperateladysaved]

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

[NoGlutenCooties]

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.

[MGR]

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.

[MGR]

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...

[MGR]

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..

[bartfull]

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.

[MGR]

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

[anti-soprano]

Hi-

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

 

Open Original Shared Link

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

 

Open Original Shared Link

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

 

Gluten Challenge research:

layman link:Open Original Shared Link

medical link:Open Original Shared Link

 

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

[MGR]

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....)