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My story and undiagnosed. Celiac?

Momof4girls

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Momof4girls Newbie
Momof4girls
Posted

I'm 29 years old and have been suffering since my first symptom 7 years ago.

It started as a small crazy itch rash on my left inner thigh. I was towards the end of my pregancy with my third child and was tested for pupps which was negative so I was told it was eczema. The rash continued. Around the same time I started having trouble with excruciating stomach pain with constipation and diarrhea, and that's when the rash spreaded to my other leg, also inner thigh. Doctor then said it was from shaving. After suffering with stomach pain for a few months, I went to a gastrologist and had upper and lower done, and was then diagnosed with IBS because my colon was spastic  Meds were given to control but never helped.

Fast forward to 2011..the rash has spreaded to the entire both legs. The rash has never went away. Nor has the random stomach pain and bowel issues. I started having sausage feeling fingers and unable to grab anything upon awakening. My eyes will go completely blurry at times, and unable to focus on anything. Constantly nauseated.

January 2016 is when i started having major problems with confusion and memory. I left my house one day to go pick up the kids from school, but I ended up 30 minutes North before I realized what I was suppose to be doing! I also have had problems being out of breath easily, and ended up having a spell at work so they did blood work right then on me. Low platelets and high immature granulocytes. I went to my regular physician 2 days later for a recheck and he said all was normal. 

March2016 I was diagnosed with Narcolepsy. Since having my 3rd child I have had severe exhaustion and sleepiness issues and finally decided to seek help. I failed my sleep study and tested positive for the narcoleptic gene (my mom and sister also have it). During this month, my scalp has started with the itch. I've started getting extremely weak and it has gotten hard to pick up my youngest, 1 yr old.

April 2016, Adderall isn't helping. I'm still exhausted no matter the dose. I can fall asleep anywhere, any time. I also started having severe joint pain in my ankles, knees, and lower back and stiffness to the point I can't move upon waking. At this time I also started having painful tingling in my feet and toes. 

May 2016 I went to the doctor and asked to be tested for RA and lupus. Both were negative, but sed-rate was high. So a wait for a rheumatologist appt now.

June 2016 , this month I went to see a dermatologist, FINALLY, about my ongoing, ugly, itch from satan rash. A biopsy was done and the report has just gotten back with the results of high eosinophils, so I'm now waiting to see an Allergist. Every nights ago I couldn't sleep from my legs being numb. I got up and looked in the mirror and they were blue and I couldn't feel myself scratching them. After I paced and the feeling came back, the pain in my joints got worse. I've also just noticed a balding spot on my scalp :(

Every since the symptoms appeared, not one has vanished or given me a break. It just keeps adding more over time. I also cannot keep weight on and I'm constantly congested, to the point I'm thinking of seeing a surgeon.

I have MVP, IBS, Migraines, controlled Hypoglycemia, and Narcolepsy. I've only been on Adderall since March this year. Besides that, the only meds I take is a daily vitamin and a birth control pill that was started in Jan this year. 

I'm at my wits end. I've been so depressed over this. I'm no longer working due to pain and confusion, which is not a good thing when you work beside a doctor! I can't enjoy spending time with my kids because all I want to do is lay down. I haven't ate much today nor had my legs itched today, but when I ate pizza for supper, just 5 minutes later my legs started itching like mad.

Does this sound like Celiac? What about my blood work results? I worked in a gyno/ob office and I'm not too familiar with autoimmune diseases, except Type 1 diabetes only because my daughter is type 1. I'm being sent from specialist to specialist, and it's getting tiring. I need answers to get relief! 

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kareng Grand Master
kareng
Posted

Any doctor can blood test for Celiac.

 I am assuming your diabetic child has been testing negative for Celiac?  Some clinics for kids with Type 1 will test siblings and parents for Celiac, too.

Momof4girls Newbie
Momof4girls
Posted
  • Author

She hasn't been tested unless her endo has been testing her without informing us. But she has been having stomach issues and itchy scalp for almost a month now,and I already have it on my list for her to get tested. It's highly likely for type 1 to develope celiac disease since they share the same strand. She's been diabetic for 6 years and we all did the once a year testing to see if we would get diabetes within a year, and everything on me and my other children have always been normal, but I  myself haven't participated since 2012. 

My physician is trying to find a dx for each symptom instead of linking them together, which is why I'm being sent from specialist to specialist.I had to nearly break his leg to get him to test me for RA and Lupus 

Jmg Mentor
Jmg
Posted

Welcome! You have found a very supportive site. 

No-one here can diagnose you obviously, but I think you need that test conducted asap. 

There are a great many symptoms of celiac. Your Dr may not me aware of this: 

Open Original Shared Link

Open Original Shared Link

Printing out one of these and ticking off which, if any apply, may be helpful in persuading the Dr to order the test. This lists 300, I wouldn't bring this though!

Open Original Shared Link

There's some more listed in this thread, although its an old one:

 

Even for your own peace of mind, your dr should test you, if they won't, change them.  If You test negative you always have the option to try the gluten free diet, the only treatment, anyway. It worked for me after my negative test. Don't do that yet though, get the tests done and you need to be eating gluten for that. You deserve an answer for your own sake and for those around you. Best of luck :) 

squirmingitch Veteran
squirmingitch
Posted

When you got the biopsy for the rash did they do it for dh? A biopsy for dh is NOT taken ON a lesion but ADJACENT to one.

Momof4girls Newbie
Momof4girls
Posted
  • Author
3 hours ago, squirmingitch said:

When you got the biopsy for the rash did they do it for dh? A biopsy for dh is NOT taken ON a lesion but ADJACENT to one.

It was taken directly on a bump. They took 3mm. When the dermatologist first looked at the rash, she instantly thought celiac but then reviewing my rash under a microscope she though folliculitis because the rash is appearing out of my hair follicles. Folliculitis was negative so now with it being high with eosinophils they think in ingesting something I'm allergic to. I'm going to make an appt with my GP next week and asked to be tested. 

Momof4girls Newbie
Momof4girls
Posted
  • Author
7 hours ago, Jmg said:

Welcome! You have found a very supportive site. 

No-one here can diagnose you obviously, but I think you need that test conducted asap. 

There are a great many symptoms of celiac. Your Dr may not me aware of this: 

Open Original Shared Link

Open Original Shared Link

Printing out one of these and ticking off which, if any apply, may be helpful in persuading the Dr to order the test. This lists 300, I wouldn't bring this though!

Open Original Shared Link

There's some more listed in this thread, although its an old one:

 

Even for your own peace of mind, your dr should test you, if they won't, change them.  If You test negative you always have the option to try the gluten free diet, the only treatment, anyway. It worked for me after my negative test. Don't do that yet though, get the tests done and you need to be eating gluten for that. You deserve an answer for your own sake and for those around you. Best of luck :) 

Thank you!!

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squirmingitch Veteran
squirmingitch
Posted
4 hours ago, Momof4girls said:

It was taken directly on a bump. They took 3mm. When the dermatologist first looked at the rash, she instantly thought celiac but then reviewing my rash under a microscope she though folliculitis because the rash is appearing out of my hair follicles. Folliculitis was negative so now with it being high with eosinophils they think in ingesting something I'm allergic to. I'm going to make an appt with my GP next week and asked to be tested. 

They did it wrong then. it has to be taken & then sent to pathology NOT looked at under a scope in the derms office. Read threads on the dh section & you'll find much info on the correct way to do a dh biopsy.

60% of those with dh test negative on the celiac blood work. Just so you know.

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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