Probably Celiac.. Scared to Officially Test. Tell me if I should.

[Concernedcc]

Hi Everyone,

I believe I have had SILENT celiac for years but have been putting off a test because it is a very scary, very restrictive diagnosis to have.  (all I know is that SOMETHING is up with my health)

Specs:
30 yo
Female
5'7
117lbs

I will list the reasons I think I have it in bullet points, starting from the beginning. 

0. It starts here:       As a toddler, suffered from extreme constipation. Very painful.. sometimes would not pass stool for days. but would TRY. very small thin child.
1. As an 8 year old child, I could sleep for excessive lengths of time. I often missed school because I felt too exhausted to get out of bed.... after sleeping for 9-10 hours.  Would lay still for days/hours at a time. (tough to reference time.. but it was a long time) I was tested for mono and scanned for tumors. this is how lethargic and I thin I was. 
2. On the contrary, at other times, I would obtain excessive bursts of energy. Running jumping shouting, laughing. (this is obviously when I would go to school). Teachers loved me.
3. Diagnosed with ADHD at age 12. Mom would not medicate me until my teens (what a saint). 
4. Somewhere in my childhood I listened to my parents talk about how my paternal uncle was diagnosed with celiac. His children were tested and a male cousin tested positive at 6yo. My dad was tested. his test was negative. his children were not tested. 
5. 13-16yo suffer from extreme COLD urticaria. Walked a long way to and from school and had awful ITCHY ITCHY hives on my thighs when I arrived home to warm up. 
7. 18yo, rapid hair loss. Had thick hair andlost about 3/4... it's still OK.... but was concerning when I was watching it wash down the shower drain. 
6. No symptoms from 18-23 (aside from constipation, which has been lifelong ... so NBD)
7. 26yo Develop a really nasty rash on both my elbows..... looks like eczema... so that's what I think it is. tried to treat it... the "eczema" last  3 years, worsening during the winter, but persisting during the summer. Suddenly dissipated a year ago....  skin all around is very dry...no sign of strange nasty itchy rash for some time. (I didn't even notice when it went away...  I think it was sudden. one day I just realized it was gone.) 
8. 27yo-PRESENT Toe next to my pinky toe frequently goes numb for no reason. when I look at it it's WHITE. No blood or nutrients there. 
9. Sometimes hear a buzzing noise in my ear. ringing and buzzing and popping....   not frequent enough to be invasive... but frequent enough.
10. Developed Cold Urticaria again... hives on face after cold exposure.... not itchy like the hives in my teens.. but unsightly. I know the hives are caused by cold exposure.
11. lost 15lbs without trying... but will admit my appetite declined. 
12. Opposite problem with my bowel movements. soft and plentiful. (lol)  frequent urge to urinate. 

 

Important notes: I have rarely vomited in my life, I have never had heartburn, and aside from energy inconsistency, poop stuff, and skin stuff, I have had no other health issues. 


 

[asdf]

I understand your fear of having a restrictive diagnosis. Naming and treating any problem pertaining to your health and well being is only going to be beneficial.  Alas, I am also conflicted with testing right now. Relating to a few of your bullet points- skin and sleep issues, ADD, was an extremely constipated child.

3 hours ago, Concernedcc said:

(all I know is that SOMETHING is up with my health)

What are your present-day symptoms? Have you attempted a gluten free diet and felt any differences?

 

[Jmg]

Hi and welcome

4 hours ago, Concernedcc said:

I believe I have had SILENT celiac for years but have been putting off a test because it is a very scary, very restrictive diagnosis to have.  (all I know is that SOMETHING is up with my health)

Uncertainty is a lot more scary.  If you're celiac learning that you are could be the best day of your life because your life gluten free and healthy could be so much better! Don't go gluten free, ask your doctor for the test. Print out that list you've posted - just the family history alone should be enough for an intial blood test. Ask for the full celiac panel if possible.

And don't worry. if its positive there's lots of support available to help you and your body will reward any sacrificies you have to make.

Best of luck

Matt 

[Concernedcc]

32 minutes ago, asdf said:

What are your present-day symptoms? Have you attempted a gluten free diet and felt any differences?

Just skin issues, numbness and tingling in my extremities, sudden weight loss, very very dry flaky skin and cold urticaria, hearing issues, and balance issues

no gastric issues. That's why I am unsure if it's Celiac or diabetes or something else all together? Maybe MS?   

 

32 minutes ago, asdf said:

 

 

[Ennis-TX]

The constipation hit home for me as that and the no energy even chugging energy drinks helped very little growing up. As a kid I got the ADHD dia. but pretty sure I am lol. Oh the constipation is caused by a magnesium deficiency in most, use Natural Vitality Calm to fix it. Start off with 1/4 tsp a day and slowly up it over a few weeks to the full dose or to the point where you get loose stools then back it down. You dose to tolerance with it

I would get the testing done, there are many gluten free options for damn near everything now, and if you go gluten free before the damage gets worse they are a option.....for me the damage was worse and it is too late for me to enjoy many foods at other complications set it.....corn allergy, dairy intolerance, peanut issues, enzyme issues and can not eat meats, UC developed and I can not eat fruit, grains, sugars.......GET the diagnosis before stuff gets more restrictive with damages. Many cater to gluten-free now and I have a WHOLE list of stuff you can look forward to.
Keep eating gluten at least 1/2 slice of bread a day and get the blood test from your doctor then the follow up endoscope and biopsy.

Open Original Shared Link
See it is not so bad look at all the options
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

[Concernedcc]

Thank you! 

Do you think it could be celiac, even though I have very little digestive issues aside from constipation? 
IE: no heartburn, no pain in my actually stomach?

 

 

 

[Ennis-TX]

15 minutes ago, Concernedcc said:

Thank you! 

Do you think it could be celiac, even though I have very little digestive issues aside from constipation? 
IE: no heartburn, no pain in my actually stomach?

 

 

 

YEP, I did not notice the pain til I was in my early 20s, even then it was mild, more other issues kept compounded it the pain came around later with other symptoms. I did something stupid in my 20s that shocked my immune system and caused my symptoms to shift and change....This disease is a chameleon with over hundreds of possible symptoms different for everyone.

[Concernedcc]

2 minutes ago, Ennis_TX said:

YEP, I did not notice the pain til I was in my early 20s, even then it was mild, more other issues kept compounded it the pain came around later with other symptoms. I did something stupid in my 20s that shocked my immune system and caused my symptoms to shift and change....This disease is a chameleon with over hundreds of possible symptoms different for everyone.

Can you tell me when you first started to become concerned?

I know it is different for everyone.... but can you tell me what led to your testing?

[Ennis-TX]

4 minutes ago, Concernedcc said:

Can you tell me when you first started to become concerned?

I know it is different for everyone.... but can you tell me what led to your testing?

.....it got worse, random feeling loss, vomiting every other meal, 7-11 days of constipation, being stuck in bed for a few days a month....I thought I was dying and running a bucket list at the time. The psychological aspect of it....It effected my brain so bad I would turn into Mr. Hyde and just start punching walls out of confusion and anger at why my body and mind were turning against me, thoughts were going loopy......scary times I would rather forget....I did a post on it.

[cyclinglady]

31 minutes ago, Concernedcc said:

Thank you! 

Do you think it could be celiac, even though I have very little digestive issues aside from constipation? 
IE: no heartburn, no pain in my actually stomach?

 

 

 

Get tested!  You do not have to have any GI issues.  I did not.  DO NOT go gluten free prior to testing!  Unless.....you have no health insurance and can not pay for testing.  Guess what?  I started getting fractures.  My cold urticaria resolved after dealing with it all my life.  (Hard to ski, but I did!)   I started developing additional autoimmune disorders prior to my celiac disease diagnosis.  I could say more, but I am out of time.  

Everyone presents differently.  You have some family history.  Prevent more damage.  

Get well!  

 

[squirmingitch]

Over 50% of diagnosed celiacs did NOT present with any GI issues. Fact.

There actually are what is called "silent celiacs" who don't present with any symptoms at all & yet upon serum panels & endoscopic biopsy are absolutely proven to be celiac. Fact. Not common but it does happen.

I urge you to get tested. I will repeat:

DO NOT STOP EATING GLUTEN DAILY UNTIL ALL TESTING IS DONE.

Tell the doc you have a family history of celiac.

This is a totally manageable disease! Look at it this way..... it isn't cancer -- you don't have to go through chemo or radiation or both. It isn't diabetes so you don't have to stick yourself with a needle every day or take any pills. It isn't heart disease which you have to take 1 or more pills for every day. 

It could be so much worse. All you have to do to feel great is not eat gluten. Seriously, you don't even miss it after a while. Yes, you will mourn the loss of it at first but you get over that. Literally every single gluten thing you presently eat can be duplicated in gluten free. There are tons of gluten free options sitting right on the grocery store shelves these days.

[celiacsojourness]

Wow you sound very similar to me in demographic and symptoms! Let me assure you that having celiac disease is nowhere near as terrible as the symptoms I experienced before going gluten free. I would joyfully give up gluten again for how well I feel now, even though I admit there have been some lifestyle sacrifices along the way.

I also didn't have terrible stomach pain and some of the normal symptoms, or so I thought. Once I went gluten free I realized that my stomach had always hurt, I just never knew what it was like to NOT have your stomach hurt. Sounds sad, but I was truly overjoyed. My life has only changed for the better. I hope you solve your mystery.

I had those itchy elbows and cold hives, and omg I am so sorry that you are experiencing those too. They are maddening!

[plumbago]

I had never heard of cold urticaria before, though I should not be surprised that it exists. Afterall, my experience is that we produce mucus in reaction to very cold weather.

This is a pretty neat site that talks about possible secondary causes (though you probably know most of this already): Open Original Shared Link

Otherwise, I would just second what everyone else has said so far - to get tested - while eating gluten! - for Celiac. Please search this site (or ask for more info) for which specific tests to request.

In addition, you could test the rash on your elbows the next time they get extremely itchy for dermatitis herpetiforus (spelling). They will do a punch biopsy which will leave a tiny little scar.

Good luck.

Plumbago

[cyclinglady]

@plumbago

Yes, cold urticaria is real!  I have had it all my life.  Back in the 1960’s girls had to wear dresses to school. I was exempted because I would arrive to school with itchy hives all over my legs and other parts of my exposed body (and here is the kicker — I live in Southern California! ?).    Hives made it difficult to swim in the Pacific without a wetsuit and very tough to ski.  Besides hives, I would swell.   It did make for a fun party topic as we conducted ice cube challenges (this was before phones and video games).  

My cold utrticia did resolve when I went Gluten Free.  Not sure if it was due to celiac disease or going through menopause because I am always running hot now thanks to hot flashes.  I did develop autoimmune hives since my celiac disease diagnosis that seem to be triggered by gluten exposure, stress, heat, medications, insect bites, or whatever!  

Here is one clinical case.  This kid was a lot like me.  Is cold urticaria related to celiac disease directly?  Not sure.  I think it is due to a cluster of hypersensitivies.  

Open Original Shared Link