Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Another Boring Plea! But I Am So Upset!

MGR

Recommended Posts

MGR Apprentice
MGR
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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 Proficient
1desperateladysaved
Posted

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 Contributor
NoGlutenCooties
Posted

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 Apprentice
MGR
Posted
  • Author

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 Apprentice
MGR
Posted
  • Author

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 Apprentice
MGR
Posted
  • Author

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..

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

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 Apprentice
MGR
Posted
  • Author

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 Apprentice
anti-soprano
Posted

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 Apprentice
MGR
Posted
  • Author

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....)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.