Sam81

So sorry for your frustrations!! One thing you need to know is the DH sufferers are the most sensitive to gluten. You need to be taking Dapsone to effectively deal with the rash. You'll need to have your blood checked every couple weeks to monitor but it's worth it. I only needed to take the med's for about 2 months and now only as needed if I accidently get glutened. I have been on the diet for 2 years now with DH and the rash comes and goes and really let's me know if I eat the wrong thing. Stay strong and be vigilent about reading labels. Get the "Is that Gluten Free?" app. It's also been a life saver. Let me know if you have any more DH questions. I completely understand!!!

I was on dapsone for 15 years for bechets syndrome but stopped taking it 2 years ago when i fell pregnant and aven't gone back on it - over the last year I have become symptamatic of dh but dr's don't listen.  Im not symptamatic of bechets though!  Will certainly look up the ap!  Am due to see a dietician who wants me to go back to eating a normal diet because they're convinced it's IBS.  Should I do that or remain on gluten-free?  Sooooooo confused!

My first thought was that I had a food allergy but I didn't have typical symptoms. Either way, I did stop eating the bars that were causing me trouble. I had to because I ate them in the morning so they pretty much ruined my whole day. At my checkup the doc told me my sinuses were inflamed which was a surprise. I have post nasal drip, tinnitus, and ear congestion (that she didn't see), but not a runny/stuffy nose. She gave me Flonase but I haven't improved. I think the Flonase makes the tinnitus worse and I've mostly stopped taking it. The flesh in my nose is completely red. My reflux came back and even though I started Prilosec it didn't help. I've never had heartburn, just chest pain, reflux, and tight throat. I stopped taking the Prilosec a week ago because I was afraid it might contribute to malabsorption of vitamins/minerals if I was deficient.

I've been doing a lot of research on Celiac disease and the connection with multiple sclerosis and it seems like I might be one who would have to eliminate dairy as well. I eat a lot of dairy. My mother has an appointment next week and I asked her to get the antibody panel for Celiac. She agreed. I'm in the middle of our "cheat weekend" right now so I'm eating a lot of gluten. I have to go back to low carb for my weight issues but I will probably still be eating some gluten and a lot of dairy. Maybe I could start eating the gluten bars before I go to sleep.

My symptoms are so severe I will be dumbfounded if they find nothing unusual in the CBC/electrolyte panel. I already know if my periods get any worse I'm likely going to end up in the ER. I almost passed out, several times. I literally felt like I was bleeding to death. My problems could be caused by the copper IUD but it makes sense that having Celiac could have had an impact on a copper/zinc imbalance. It would also explain the parasthesia I was getting before the IUD, not to mention my entire life.

When I was pregnant I kept telling the doctors I was having persistent pain under my ribs (left side). One doc said, "There's nothing there. That's just your intestines." So, I thought "doh, gas". After pregnancy I continued having the pain but it was on the right side (mostly). That's why they did a full abdominal ultrasound (normal). Now it's just extreme bloating and intermittent cramping, particularly in the upper abdominal area. It almost feels like I'm pregnant again.

My brain fog is also extremely disturbing although it's slightly better when it's not that time of the month. I have it ALL the time in differing degrees of severity. It makes me want to crawl in the bed and close my eyes just to try to escape it.

I'm constantly dehydrated. No amount of water helps. It just goes in and comes right back out. Before I thought of Celiac I assumed I might have an electrolyte imbalance so I also asked for a blood test for that. My hair falling out is freaking me out too. My scalp is dry/scaly and sometimes I have a weird burning/painful sensation. I have muscle tension in my neck/shoulders that also burns. It's the strangest thing.

My mother truly believes something is wrong with me. She told me to listen to my instincts and don't let the docs ignore me. She used to tell me to get over it (lol)! I really hope she tries out the diet after her test. She supposedly has remitting/relapsing MS but I swear she seems worse every time I talk to her. I'm so afraid it's some kind of dementia that's getting worse. It will be so hard for her to do the diet because she is over the top crazy about bread. She once told me if that was all she could eat she'd be perfectly happy. =(

I've been reading through threads here and everything seems to fit me so well. I ran across a post with a picture of a baby who had "allergy cheeks" and it looked just like my son. He often has those red/splotchy cheeks, particularly after eating. His breakfast, snacks and some of his "convenience" meals contain gluten. My end game plan before I ever heard of Celiac was to convert to a Paleo type diet for the whole family so I will only have to struggle with the dairy part. My son is too little to care and my husband has been doing low carb with me. I'm fairly certain if I had never started a low carb diet I would never have noticed the relationship between food and how I feel.

It will probably be a while before I see the GI doc and neurologist, maybe a month. I will be checking in here though. =D

I have very similar symptoms to you.  Dr's have given up on me claiming I too am a hypochondriac and prescribing me anti-depressants.  I have just attempted the gluten free diet - 3 weeks now and it's helping.  whatever it is - it's helping.  Good luck and keep smiling...  ...if you can.

have you tried going gluten free to see if it helps?

Everytime I plan and attempt it I get a glimmer of hope that dr's may test for it so I don't start it!  I haven't a clue were to buy stuff in UK so it's taking a lot of time planning - I don't want to be eating salad forever.  I'm also vegetarian so that's adds complications in terms of protein or lack of it as all vege stuff is loaded with gluten and wheat.  I'm being referred to an immunologist for akllergy to wheat.  I'm going to ask for a rhematologist - even if i play on the behcets angle...  ...been a while since they checked me out anyway...

I just feel like bechets and lupos are not real - you can only manage them - not cure them... Does that make sense to anyone?
I certainly dont mean to offend anyone by that statement - My family can't accept them.  They laughed when I told them.

And you aren't a head case.

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial.  They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives.  Apparently Hives urticaria don't last more than 24 hours...  Not what I've read.  Also, they have done a RAST test for allergy to wheat...  All because I stamped  my feet.  They now think I'm mental...

Just looked art the coeliac site - annoying you can't get access to everything without a medical diagnosis - how unfair is that!