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Possible Dh


AliPringle

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AliPringle Newbie

Hi everyone this will probably be a ramble but I'm honestly fed up.

A bit of background -

At 13/14 diagnosed with raynauds

At 15/16 horrible itch rash developed in both palms.

I am now 30 and struggling with numerous niggly complaints that alone I probably wouldn't even think about but put together they are adding up.

The only symptoms present now that have been there through out are the raynauds and the rash.

The rash is incredibly itchy , starts as red bumps, them little blisters which are quickly scraped off. At its worst I had to bandage my hands through the day and wear gloves to bed as I had scraped them so raw. Steroid creams had limited success with controlling this and symptoms would come and go. I seen a dermatologist in my teens but recieved no diagnosis or further treatment.

In mid 20s I decided to loose weight and list 5 stone. Throughout this period the rash improved but never disappeared. This remains the case now. In the past 2 weeks I have had 2 flares although they are nowhere near as severe as they used to be.

However for the past 18 months I have just been feeling really awful. The main issue is major fatigue i will sleep 9 hrs of an evening and still fall asleep through the day if the opportunity presents. Along with this I also have the following issues

Hair falling out

Bloating, bubbling and wind

Minor constipation

Extremely dry eyes (to the point I can no longer wear lenses)

Night Vision problems

Aches and pains (muscular and joints)

Irritation/moodswings

Raynauds

General sensitivity to cold

Now twice in the past 6 weeks I've had bloods done and had a no to coeliac. Also had a coeliac test done maybe 5 years ago which said the same.

My dad suffers from vitiligo and scleroderma and my dad's aunt from coeliac.

I spoke to my Dr after last bloods and she's baffled and is currently going back through records to the raynauds diagnosis to see if it sheds light and I'm back to see what she thinks on Tuesday.

My gut instinct is to diagnose the hand issues, shall I push for biopsies ?

Sorry for the ramble

Ali

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cyclinglady Grand Master

But did you have the complete celiac panel? Here it is:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

If my celiac disease savvy doc had not ordered the complete panel, I would have been in diagnostic limbo land. I had only one positive on the DGP which is usually not included in the celiac disease initial screen test. Having another autoimmune disorder may have messed with your results. I would ge copies of your lab results.

Welcome to the forum and let us know how it goes!

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squirmingitch Veteran

Ask for a dh biopsy. Tell them if nothing else you want to rule out celiac disease. Inform your doc that 60% of celiacs who have dh test negative on the celiac blood panel. The dh biopsy must be taken on clear skin adjacent to an active lesion.

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cyclinglady Grand Master

Ah! Forgot that in this thread. Thanks, Squirmingitch!

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AliPringle Newbie

Thanks guys, I'll quiz on what's been done already, and push for more if necessary! It's getting ridiculous, gone on far to long. Unfortunately this does not seem unusual!

Ali

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squirmingitch Veteran

Ah! Forgot that in this thread. Thanks, Squirmingitch!

No, it's good to have both the bloods & the dh biopsy done. You never know when 1 will turn up positive. It is important to see if she got the FULL celiac panel done. We know how docs like to skip some of the tests in it. 

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AliPringle Newbie

It's all rather a minefield, I don't know why they just don't run full panels on stuff, it doesn't seem to be just coeliac this isn't done for. I'm just gonna have so sit there and not move till they move further with this. But now the stupid rash has gone again!

Ali

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squirmingitch Veteran

If it's dh rash it can come & go as it pleases. 

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AliPringle Newbie

Yes it does, very inconvenient :) , this has been the case for the past 15 years now.

Ali

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ravenwoodglass Mentor

I am looking at that adorable little person in your photo which brings me to my question. Did your increase in symptoms that you mentioned happen after you gave birth? Celiac disease will often come on or symptoms can worsen after you have a stressor like pregnacy and delivery. 

There can be a fairly high rate of false negatives with celiac testing.  This, as was mentioned, happens for folks with DH fairly commonly unfortunately. When you are done with all celiac related testing it might be a good idea to do the diet strictly for a few months and see if your symptoms resolve.  Sometimes the body can give us answers that testing doesn't.

Hope you get some relief soon.

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AliPringle Newbie

Hi

Yes things have kicked of since having my daughter who is now 3.

The rash and raynauds have always been there and minor (very minor) concerns of the stomach for maybe 5 years. But everything else has massively reared its head in the past 2 years.

18 months ago went to drs was told all was ok, changed my pill and accepted their view. 2 months ago went back as was feeling terrible and I'm pushing now until I get somewhere!

Thanks

Ali

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AliPringle Newbie

Ps I've not gone strictly gluten but when I clean my act up I do feel much better.

This is something I've considered and if things go nowhere I may have to do off my own back!

Ali

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squirmingitch Veteran

You have to keep eating gluten for testing & that includes dh testing.

 

Thing is, if you get a dx it will be much easier to get your daughter tested on a regular basis as she should be.

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AliPringle Newbie

Hi I know it's important to keep gluten in the diet for diagnosis, which is why I'm continuing to eat it, luckily I don't have really severe reaxtion. Here in the UK if I get diagnosis I'll be able to get essestials on prescription and as you say for DD in the future it may be beneficial

Dr has looked through the notes and the diagnosis ( in 2005!) on Record was dermatitis?? Excema?? And no further treatment needed currently that was when I was 19.

The Dr says she's stumped and although they're running bloods again (again vague as to what exactly) my file is being taken to some sort of meeting/panel for complicated (ie I've not got a clue) patients.

I showed her photos of my 3 recent breakouts but I'm being referred to a rheumatologist not a dermatologist ? God knows where it goes from here :(

Ali

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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