New Here - Questioning A Gluten Challange - Here Is My Story...

[MissyLala]

Hi All

I am so glad to have found this forum, I just wish I would have found it sooner. I wanted to tell my story and see if anyone can help with

a few things. I have a billion questions and I do not have an official dx.

I am loosing my mind over this and I am seriously depressed and have a ton of anxiety about how to live with this.

First I am a 35 year old female and married with 2 little girls ages 4 & 6.

My first outbreak happened last year in May of 2014 at age 34.

It litterally started all in one night and changed my life. On that night I was sitting on the couch watching TV and I felt one little itchy bump under my right arm. I itched for a second and asked my sister if it looked like I got bit? She said ya it kind of looks like a bug bite, but a little rashy..as the night went on, more of them started to appear and they spread down my arm (all underneath) and down my forarm down to my wrist. By the next day it was now on my left arm and started in the same exact spot as my right arm (mirror image) and spread the same...This was on a Saturday and Sunday and I saw my Dr Monday.

Prior to this I had gone into my Dr the Monday before this to see about some kind of shot or something I could get in my lower back because I had a really annoying ache in my lower left "SI Joint" - I had been seeing my Chiropractor for the last year before this and he couldn't seem to get it back in place and it just always ached so I thought maybe my Dr could help. SO...he gave me 3 little shots of Cortisone in my back and sent me home with a 5 day dose of Celebrax for the inflamation and I was to see him a week later that next Monday.

So my rash started about 6 days after the shot. I only took about 3 doses of Celbrex bc by that Friday I started to feel kind of weird. Like a bit dizzy and tummy ache and headache. So I thought "I'm going to stop taking this bc I don't feel good and I'll tell him Moday", but by that next day the rash had started. So I originally thought I was just having a bad reaction to either the shots or the celebrex. When My Dr saw me that Monday he said Ok, just stop taking the meds (which I already had) and here is some potent Steriod cream - it was Clobetesol (not sure this is how you spell it?) I asked how long this should last and he said it's hard to say with rashes...come back if it gets worse.

I went home and within the next day or so the bumps started on my right thigh and went down the front of my leg and wrapped around my butt then they appeared in the same pattern on my left leg...I was applying the Clobetesol every day (small amounts, but twice a day) the itch was really uncomfortable at night when they would appear.

I let this go on a few weeks bc he had said rashes were hard to tell - a few weeks in I went back and he even had another Dr come in and they looked and asked if I got poison ivy or changed my soaps pillows etc...No No No nothing. But I was out in some bushes that night I said...I was looking for rocks to paint with the kids and maybe I got bit or brushed against something? they thought it looked like contact dermatitis....he then said if it gets worse or doesn't go away go to the derm. so I waited and kept doing the cream.

By now it was end of July so I went to the derm...he said it was Eczema/Dermatits. I mentioned DH bc at this point I had been googling every night and I noticed DH followed a pattern and mirror imaged and could look like bug bites etc....now back before this big break out I had, had 3 little itchy bumps on my right elbow that I thought were odd, but didn't bother me much just itched slightly once in a while and I thought maybe it was from dry skin? The derm told me that if it were DH I would have itched it sooooo bad that he wouldn't be able to see my bumps bc they would be bloody or pussed/scabed over etc... ( but I kept thinking but what if mine isnt that bad? its just more mild bc of this steriod cream?) but he said well the test if really expensive and I honestly don't think you have it so I wouldn't waste your money...so I went home and used my cream. Now, the rash wasnt insane when people would see it they just looked like some tiny bumps maybe some bites.... So I checked our beds and had our exterminator come in and check for bed bugs. NOPE. then had the derm scrape me for scabies. NOPE. asked again about DH...NOPE. SO I waited and saw another derm...by this point it was August. I told her some new things were starting to happen...I was having a lot of joint pain or atleast what I think is joint pain? Its in my elbows when the bumps appear my elbow get realllllly achy and when I would be sleeping I would have to extend my arms out bc they would ached so bad while bent. My knees would ache too when the bumps were on them. I would get weak in my arms. I would have super bad panic attacks in the middle of the night so I was loosing a ton of sleep. I would be in a dead sleep and wake up with a rush of adrenaline feeling and a racing heart beat like I was super nervous and scared or something? Its the weirdest feeling. This would happen every night by this point. I also started to feel like my back was sunburned and I would get some creepy crawly sensations in my legs knees and elbows.

So I asked the new derm to do a blood test for Auto Immune disorder...She asked why and I said bc I've had this rash for 3 months and now I have joint pain and I read that could mean something auto immune. So she did what I asked. She called me a week later and said it came back slightly positive for auto immune anitbodies (ANA was 1:40)

Next I took those results to my Regular Dr. (I've had this Dr. since I was 6 years old so I trusted him with my life) he said ok so now I am going to run a Lupus panel on you bc anytime we get a positive ANA we run a lupus panel and I'm going to add some thyroid stuff on there bc your Mom has Thyroiditis (Hoshimotos) I said well since your doing that will you run a celiac panel on me? He asked why and I told him I read about this rash called DH and it comes on in your 30s and 40s and I think maybe this is it...He said - you don't have celiac!

I said, but can you just add it on the panel he said you don't have diarrhea or stomach problems....I said I know,b ut these people don't usually have the stomach problems. He just looked down and kept typing out his blood work stuff and that was that. He had his nurse come in and take my blood and I thought maybe he added in the celiac panel...NOPE! A week later he called me in and told me my thyroid looked fine and my lupus panel came back saying I was "borderline" for a "double stranded DNA - DSDNA at a 7" and >10 is positive. So he said now you have to go to the Rheumatologist bc you are borderline so he will run some extra tests, but I don't hink you have Lupus! So off I went....in the meantime still having all my random night waking elbow aches etc...now right before I went to the Rheum. bc he had a few week wait list...I broke out one early morning in some watery blisters all around my elbow. I woke up to a burning pain in my right elbow and I mean a deep burning pain that felt like it was in my bones. Within an hour I had some little blisters appearing all around my elbow almost in a cirlce. and now I was getting some dry itchy flaky skin on my eyelid. These blisters did not itch at all like the little bumps usually did. These just hurt. They never popped or pussed not did I feel the need to touch them! I didn't use the steriod cream either. While I was waitng for the Rheum appt I decided to try an Allergist. He took one look and said thoses don't look like a food allergy, that looks herpetic! So he said you should ask your Rheum if its herpes? and off I went.

The next day was my Rheum appt. He happens to be a close family friend. He looked at them, but was just as confused as everyone else?? He gave me some Valtrex and said see what happens??? He did another blood text work up on me with extra tests and neither would he run a celiac panel bc that wasn't his specialty? He felt my joints and nothing was swollen or red and he didn't think it looked like a lupus rash or psoratic arthritis or psorisis, but he called me a week later and said well your ANA is a bit higher with my test - it's now showing at 1:320 and that is considered elevated for antibodies, but your DSDNA is still low and borderline so??? He said I'm not going to say you have Lupus and your Sed rate and inflamation is at a 2 which is nothing...so its not Rheum arthirisits etc...he said call me if you feel worse or things change, but as of right now the picture isn't clear on anything specific...

So now we are in September and I see my Chiro and he says...why don't you try this diet....it's called WHOLE 30

You remove Dairy Gluten and Sugar as they are all inflamatories and see if it helps your joint pain and maybe clears up your rash - I felt like what do I have to loose? So I did it and it was realllly hard, but I was feeling better. Still breaking out, but way better.

Day 30 I was done and they say you can have a bowl of ice creal to celebrate at the end and then reintroduce those 3 things slowly over the next few weeks. Well we were on vacation for my 34th Birthday in Maui ( how many times will I get to do that again? it was such a wasted trip for me I'm just glad my kids had fun). So I decided to have the ice cream and some garlic bread and ranch etc...and by day 3 here came the itchy little bumps. I cried. I cried the rest of the two week trip and sat in my room on my 35th Birthday wondering how the heck I was going to live like this the rest of my life. My kids barley got to play with me bc I was so depressed. So while I was on the internet i decided to look up a naturopath in my my area. I found one that happened to have celiac herself. The day we got back I was in her office and I told her my story and showed her my pictures. She said no matter what the illness they alway do a food sensitivy panel bc diet can change everything. So we did one and two weeks later it came back she called me in and said "this is very indicitive of a Leaky gut" so I removed everything that showed up - I could no longer have anything I love at ALL. Not even eggs or bacon. So the only things that I could have were veggis fruit (except Bananas Pineapple and Cranberries) and chicken and turkey and fish ( I don't like fish) and beans and brown rice. So to this day thats all I eat. I still broke out from October (when i started) to February this year. Then FINALLY in Feb. I stopped. and that lasted throught April. Then one day I nroke out on my tummy in a few itchy bumps. and its continued since then. I get a few little dots and they itch for a second to let me know they are there and then they stop. I got some on my elbow last week one on each elbow. They itched and stung for seriously a second then stopped and they hung around for a week and now they are gone. So is that DH after youve been gluten-free for a while?

I got my Rhuem to finally give me celiac panel when I got back too and I told him I had been gluten-free for 40 days with a little mess up in Maui and he said well it should still show up. It came back negative! I also went to the derm and asked her to biopsy for lupus and DH finally and it came back negative. UGH I have wasted a ton of money in the last year with no real answer. I saw a gastro this year a little late in the game. But I showed him my pictures and told him my story. He said he would do the endo if I choose to challange it. So I am sitting her debating? Not only for my own satisfaction of a diagnoses, but for me kids...I feel like I want the to be able to know what their mom had.The gastro gave me a slip to have the kids genetically tested and they both showed negative to both DQ2 and DQ8 but my oldest showed one Aleeil (spelling?) to DQ2 - she still showed negative to both genes but has the one aleeil and the gastro says hes confident that neither of them will get celiac. I have DQ8 so we can't rule it out for me. I just feel hopeless and helpless....I could really use some advice and a friend to help me through this emotionally and navagate how to get through the rest of my life like this?

I feel like my life was just ripped away from me and everything Is just so much harder to get through a day without completely focusing on food it drives me bonkers. I cry all the time like almost everyday. I still get the weird aches in my elbows especially when the bumps come. Anyone else have panic attacks, achiness in the places the rash comes if there is a joint? My scalp gets one or two rasied bumps like the size of a tiny pimple and itches for a second and then leaves me alone? could this just be food sensitiviteis?

I will work on uploading my photos tomorrow bc its 1am. I tried to post this before and it cut off all my typing I had to re type it out again :/ I could so use a friend that could even exchange numbers bc being a Mom of two little ones makes typing out all my questions realllllly hard. I'm lucky I could do this long post tonight without someone waking up before I was done.

Here are a few questions I can think of right now:

I know there is a gluten-free drug list, but I took Xanex to try and deal with this anxiety I'm having and it said the brand I was taking was okay, yet I broke out in itchy bumps and hives on my hip area when I take it.

Antibiotics? Any that are not okay?

What do you take for the commone cold?

Does Sunscreen break you out? What kind can I wear?

Shampoos and Soaps?

Toothpaste?

Laundry Soaps?

Swimming? Ocean or Chlorine bother anyones skin?

If I do try to challange this...should I just know the answer within a day or two will it be obvious?

What do your breakouts look/feel like after being gluten-free for a long time? If you breakout is it super mild like mine?

Thanks for listening and reading this I know its so long. but I've been waiting till I could tell my whole story and get as much help as I could...again I'll get my pics uploaded tomorrow so you can see what I'm dealing with.

Hugs to all. I look forward to your opinions and advice.

-Missy

[GF Lover]

Hi Missy and Welcome to the Forum

 

First, let me say, so sorry for what you're dealing with.  The Doctors you have seen gave you typical responses that most of us get trying to get diagnosed, it's very frustrating.  I want you to read the link below.  Print out relevant pages and present them to your Doctor.  

 

Open Original Shared Link.

 

Celiac's who present with DH have a much higher rate of testing negative on the Celiac Panel because the antibodies are under the skin.  The proper way to biopsy DH is to take the sample adjacent to an active lesion.  Steroid cream can also cause a negative test result.  A challenge for Blood testing is 8-12 weeks eating the equivalent of a piece of bread per day.  For endoscopic biopsies the time is 4 weeks (I think), someone will correct me if I'm wrong.  

 

There are 2 long standing members who can help you with DH lesions and how to deal with it.  They are "SquirmingItch" and "Ravenwoodglass".

 

When you look at the symptom list for Celiac, in the link provided, you will see that everything you are experiencing is listed.

 

Now, about the Food Sensitivities Testing.  You would be well served to ignore the whole thing with the exception of dairy.  There will be a time after diagnosis to start a food diary if needed.  

 

Hang tight Missy.  We can help you get through this process    

 

Colleen

[ravenwoodglass]

I am so sorry you are going through all this. Trying to get a diagnosis can be well trying. 

First if you had been gluten free for 40 days your celiac panel could well have been a false negative. In addition it is not uncommon for folks with DH to have negative results. 

How was your biopsy done? If it was done on a lesion it will be negative for DH. They need to biopsy next to an active lesion to look for the antibodies. 

You want to limit iodine for a while until the lesions heal. Don't drop it forever though as that will be a problem for your thyroid. I only had to drop iodized salt but some have to drop foods high in iodine also. 

I have had to take Xanax myself. At the time I took it the doctor called with me in the office and we had to go with alprazolam (generic for Xanax) as at that time the name brand wasn't safe. Don't know if that has changed. 

Before I take any script I find out the company that makes it and call them directly. Some pharmacies are good at calling for you but some are not. I ask what company makes it and call before I pick up the script as they can not be returned once the med leaves the pharmacy.

I can't answer about the cold medicine since I haven't had a cold since I was diagnosed. Don't know why cause I used to pick up any bug that was around. 

I haven't found a sunscreen that I can use either but I don't think that is a gluten issue I just have sensitive skin.

For shampoo and conditioner I usually go with Garneir, Suave and recently got some Tresaderm (SP?) Just look for wheat germ oil or oats on the label.

Most toothpastes are safe. I use Pepsodent since it is cheap and I like the taste. 

For a long time I used Arm and Hammer dye and scent free. It worked well but now I am okay with pretty much any cheap brand. Tide makes me itch but that may not be a gluten issue. 

Can't answer about swimming. Love to but haven't been in years. 

You should read the Newbie 101 thread at the top of the Coping Section as it will have much helpful advice about things that many don't think about. Like kissing a gluten eater who hasn't brushed their teeth. Who would have thought that could be an issue but it is.

Do keep in mind that if you want any further celiac testing you need to stay on gluten or go back on it for 6 to 12 weeks before any more testing is done.

[squirmingitch]

Hi Missy. I too am so sorry you're going through all of this. I doubt it helps but almost everyone on here has been through the whole trying to get tested thing & docs who don't know what they're doing & the docs who insist you don't have celiac yet refuse to test you for it. Talk about a broken record!!!!! Over & over & over again.

 

Celiacs with dh test false negative on the celiac blood panel 60% of the time. And your doc (as is the case with SO many) may not have done the full celiac panel. Get a copy of the blood panel that was done on you & please post it here along with the reference ranges listed on it. Also please post the supposed dh biopsy that was done on you -- I bet it was done ON a lesion which is useless.

For the celiac blood panel, the dh biopsy and the endoscopic biopsy you MUST have been eating a normal gluten diet or you will get false negatives. 

 

I agree with Colleen about the food sensitivity testing. It's bunk. Sorry. I do understand why you ended up there though. Desperation. 

 

For OTC medications I check everything -- I call the companies. The same goes for prescription meds. There are also online lists you can check.

 

Shampoo I use Suave & Ravenwoodglass told you what to look for in those anyway.

Like Raven I can't use sunscreen either -- skin is too sensitive. 

Crest & Colgate toothpastes are gluten free.

Laundry soap I use ALL FREE & CLEAR & for a while I have been using the store brand equivalent of ALL Free & Clear -- mostly because I can't stand to smell the scented laundry products -- I don't want to walk around smelling like my washing machine.  

I have not been swimming since I found out I have dh. 

Colds --- thankfully I haven't had any since dx.

Most people with dh report they break out in dh anywhere from an hour to 2 or 3 days after being glutened. Me? I don't know. I don't take any chances. I don't eat out since there are no totally gluten free eateries anywhere near where I live.

Read the Newbie 101 here:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I think for your kids sakes you need to get tested the RIGHT way but that decision is ultimately up to you. 

[sneezydiva]

Hi.  I have not been on the forums in a long time, but I still read the newsletters, and occasionally click on the selected topics.  Anyway, I logged in to tell you that you should be tested for Lyme disease.  The suddenness of your ill health and original rash makes me highly suspect it.  Most of us here had trouble remembering a time when we felt well before diagnosis.  The racing heart rate at rest and anxiety and joint pain you described are symptoms, and many people get atypical rashes that spread to different parts of their body, not the classic "bull's eye" rash all the websites say to look for.  It may very well be gluten, but if I were you, get Lyme ruled out. 

[MissyLala]

I created a Photobucket - how do I upload the photos now?

[vincehh]

I think the gluten problem is due to the ant-inflammatory celebrex.

 

The anti-inflammatories work by suppressing signal molicules called eicosanoids, theses do jobs like :

clotting blood

dilation or contraction of artaries

controls immunes system

surfacants in the lungs

many more I don know

inflammation

protection of lining of stomach from stomach acid ***************************************************

 

The last one could be it. These drugs are renowned for causing stomach problems, when I was on them I was also taking drugs to prevent stomach ulcers that drug was causing.  While the lining of the stomach is in the unprotected state the gluten is touching parts of the digestive tract it would normally never touch and so triggering an immune response.

 

There it is, that is how anti-inflammatory drugs can cause gluten intollerance or full blown celiac.

 

This explosion of cases of celiac disease in last couple of decades or so could be due to a new family of anti-inflammatory drugs.

 

Also the wheat we have now is nothing like the wheat of 100 years ago.

The carbohydrate in wheat we do not need!!!

The little protein in wheat called WGA wheat germ agglutinin may also be contributing to diabetes as it binds to insulin receptors.

 

Eicosanoids

These are made in the body from only omega 3 and omega 6 fats.

Almost all the ones made from omega 6 are causing ill health. These are the ones targeted by asprin etc and even anticancer drugs.

The ones from omega 3 regulate the production and without these the the ones the harmful ones are produced with out regulation(out of control)

The harmful ones cause diseases like Arthritis, Allergies, Cancer, heart disease, stroke etc

 

The modern diet has far too much of the omega 6 found in the vegetable oils developed in the 20 th century.

 

Look out for hidden gluten: they put in in almost every thing, I found wheat products in dried fruit

 

I blame anti-inflammatory drugs taken for arthritis in my big toe for my DH and my stomach is not too happy since either.

 

Vince

[MissyLala]

@sneezydiva I was tested for Lymes and my blood tests were actually positive, but thwn they ran the WESTERN BLOT twice--- it was completely negative both times...so I took four weeks of doxycycline anyway and still have probs all doctors are telling me that I do NOT have lymes based on the two western blots being negative. SO I am still sitting her wondering what the heck this is. Which is why I just want to challange it, but I am sooooo scared after seeing all of these photos of peoples rashes get crazy after being glutened. EEEEKKKK I just don't know what to do

[MissyLala]

Open Original Shared Link

 

please let me know if this link works to my "rash album"

[ravenwoodglass]

Yes Missy the link did work for me. Some of your photos do look like they could be the DH rash.

 

Vince, I also have taken Celebrex but I had Celiac long before I took. I also have arthritis and that was one of the celiac symptoms that was quite pronounced for years before diagnosis. I don't think the Celebrex caused your celiac but any stressor or illness can cause celiac to become more pronounced and can be a trigger for more symptoms. 

[squirmingitch]

Your link worked for me too. I believe that you could very well have dh & therefore celiac.