• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Stepping Out On A Limb And Self-Diagnosing...crazy?
0

12 posts in this topic

Hello All! I am relatively new to the forum. I joined a couple years ago after our son was diagnosed with celiac disease and couldn't pull myself away from the computer for two days! I was a sponge on this forum and am so thankful to this day for all the information everyone offers. I'd like to share a bit of my background with celiac....

On his 16th birthday, our son stood only 5'3". As a baby he was consistently in the 75-90th percentile for height, then began to show up in the 50th around middle school, and by high school was in the 10th percentile! Enough was enough. Our fabulous primary care doctor talked to us for an hour (like no one else was waiting) and listened to my concerns about growth hormone?, delayed puberty?, thyroid?.....He wanted to do blood work first, and mentioned that he had recently had his first patient with celiac and was doing a lot of research, and that our son's short stature and delayed puberty COULD BE a sign. Sure enough....tTg level was high so an endoscopy was scheduled. The initial visual seemed normal, but the biopsies showed celiac. After going gluten-free, he has grown 7 inches in 2 years and is still going!

We found out a year and a half later that my dad, who was 72 at the time, also had celiac disease. He had become very ill and lost over 40 lbs in a month! He said it felt like food was getting stuck (pointing to the middle of his torso), so he could eat very little and it had to be soft so it would go down. Long and sad story, but we eventually found that my dad had a blockage, and then that the blockage was a tumor outside the duodenum, and then that the tumor was cancer in Stage 4B. The biopsy came back as pancreatic, and we lost him 3 weeks later. Silent celiac.....

Right before daddy died, my sister was diagnosed with dermatitis herpetiformis (or DH). She was told she was gluten intolerant and immediately went gluten-free, for the most part. In all the reading I had done after we found out about our son, I had never read that DH is a confirmation that you have celiac, but yesterday I started a little research again and read it in several places! So now I have to call my sister to tell her not to be flippant about her diet. She really is pretty careful, but enjoys the occasional beer.

All of this leads to me and my symptoms. I have not had an endoscopy, but am feeling as though I probably don't need one. I would appreciate if those of you more experienced would give me your thoughts. I've wanted "to just know for sure" for a long time, but think I already do. Here are my symptoms:

Fatigue (heavy, but not totally debilitating)(since a teen)

Anemia (when pregnant, and diagnosed about 7-8 yrs ago)

Painful periods (ablation 3 yrs ago helped with heavy bleeding)

Brain fog, forgetfulness at times, lack of focus at times

Depression (no meds)

Trouble sleeping

Joint pain (last 3-4 years)

Muscle weakness

Slight scoliosis

Geographic tongue

Psoriasis on arms/hands/occasionally legs

Unconfirmed DH (small spot that recurs right above my butt (sorry) and itches like crazy for days!)

No abnormal digestive issues

I'm not looking for a diagnosis, as I know it cannot be given here, but I do value your thoughts. The main things I find concerning about my own list are the family history, anemia, possible DH, and the geographic tongue. I read an article a while back that geographic tongue should be a red flag for celiac disease that all dentists should mention to their patients. Thank you in advance for any comments!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


i'm curious-what is a geographic tongue? Can you see maps on it? lol. Seriously though, curious what that is. Also it sounds like you should get tested for sure. Or eliminate gluten for a month to see how you feel?

0

Share this post


Link to post
Share on other sites

I don't think your self-diagnosis is at all crazy, with your family history. We know the genetic predisposition had to come from you or your husband, and you are the prime candidate. But don't go gluten free, if you don't think you will believe yourself in the future, until you've been tested, because once off gluten it's hard to go back on.

2

Share this post


Link to post
Share on other sites

Mushroom's answer is so right on.....also may I suggest along with celiac testing, you do a full blood work-up.. Vit D, B-12, thyroid (not just a TSH),Calcium, Iron, ferritin for starters, CBC with dif, lipid panel, .crp....

1

Share this post


Link to post
Share on other sites

Mushroom's answer is so right on.....also may I suggest along with celiac testing, you do a full blood work-up.. Vit D, B-12, thyroid (not just a TSH),Calcium, Iron, ferritin for starters, CBC with dif, lipid panel, .crp....

Oh, talk about brain fog and forgetfulness! I've had bloodwork done in the last 6 months. Everything was normal, though my iron level was at the very low end of normal and I take iron several times a week. I also had genetic testing done almost two years ago and have both the DQ8 and DQ2 markers. I KNEW I left something off the list!
0

Share this post


Link to post
Share on other sites
Ads by Google:


I hope you will soon be having a happy gluten free life! Keep your mind on analyze!

Diana

0

Share this post


Link to post
Share on other sites

Family history above you, below you, and to the side of you as well as genetic on paper for yourself should be diagnosis enough for you to never second-guess yourself in the future...some of us don't have the familial support or resources. If you are serious about wanting to feel better, it's not crazy go gluten free as soon as possible...just know that if you end up having tests performed after giving up gluten, that they may give a false negative because you will no longer have it in your system as you do today. Good luck!

0

Share this post


Link to post
Share on other sites

Your symptoms, genetics and low iron indicate celiac disease. I agree that completing all testing before eliminating gluten is the best option. Once gluten is removed this starting data is lost - for some - including me - data has helped when removing gluten did not bring healing or symptom improvement right away.

Make sure you have had complete celiac antibody testing:

tTG - both IgA & IgG

EMA

DGP - both IgA & IgG

Along with all the nutrient testimg Mama mentioned - I would add:

Vit K, copper, zinc, CMP

Ask for written or electronic copies of all test results - pay attention to results within "norrmal range" yet on the very low or very high sides of "normal" - given your father's history I would not dismiss the idea of an endoscopy - go to a GI that specializes in celiac disease if possible for this.

Once testing is complete - remove ALL gluten - I usually say for three months - my guess is it will be for good for you.

Any other children? Siblings? Nieces/nephews? Everyone in your family should have complete celiac panels - every 3 years - more frequently should symptoms arise.

Hang in there and keep reading and asking questions - brain fog makes it a bit tougher to analyze things at times - we have been there and can help :)

0

Share this post


Link to post
Share on other sites

I agree that completing all testing before eliminating gluten is the best option. Once gluten is removed this starting data is lost - for some - including me - data has helped when removing gluten did not bring healing or symptom improvement right away.

Make sure you have had complete celiac antibody testing:

tTG - both IgA & IgG

EMA

DGP - both IgA & IgG

Please share...I am very curious to learn how the data from these tests helped you when beginning on a gluten free diet, how so?
0

Share this post


Link to post
Share on other sites

Had I not had initial data - I would have had nothing to compare after removing gluten. For a very long time the only improvements I had were serological. Same with my kids and grands - we test barely possitive or within "normal" ranges with so many tests - comparison has provided the most info we have ever had. For instance my b12 always hung around 180 - for decades - it has been over 750 for the past year or more. My celiac antibodies were all reduced at 3 and 6 mo checks and close to non existent at a year gluten-free.

Sadly I continue having annual endoscopies as it has taken over three years to begin to heal the total atrophy found when I was finally diagnosed.

0

Share this post


Link to post
Share on other sites

Family history above you, below you, and to the side of you as well as genetic on paper for yourself should be diagnosis enough for you to never second-guess yourself in the future...some of us don't have the familial support or resources. If you are serious about wanting to feel better, it's not crazy go gluten free as soon as possible...just know that if you end up having tests performed after giving up gluten, that they may give a false negative because you will no longer have it in your system as you do today. Good luck!

Thank you, saaa-wheat! I had never thought about my family connections to celiac that way, but I can't get the visual of your words out of my head. You're right that I am absolutely surrounded! I have decided to skip the endoscopy because I truly feel there is plenty of "evidence" without it. In my mind (you know, the one with brain fog...) the endoscopy would have been CONFIRMATION, which I crave. But in all honesty, I'm tired of trying to convince myself that it may NOT be celiac when all the indicators say it is. Why do I need one more?? I feel lighter already! Which is great, because I need to lose about 40 lbs. ;)
0

Share this post


Link to post
Share on other sites

i'm curious-what is a geographic tongue? Can you see maps on it? lol. Seriously though, curious what that is. Also it sounds like you should get tested for sure. Or eliminate gluten for a month to see how you feel?

In my case, geographic tongue means I have cracks all over the surface of my tongue -- kind of looks like a road map, yes. Others will have round spots. I have areas on my tongue that will hurt for a short period (about 15-20 minutes) after I eat certain things, like pineapple, too many tomatoes, sometimes even bananas! Kiwi makes my mouth "itch" but I love it so I tolerate it occasionally. Mildly spicy foods that most people can tolerate will set my tongue on FIRE! Even ice cream, which is my weakness, will make me uncomfortable for a time. My theory is that these foods get down deep into the cracks on my tongue and affect me more than most people. My oldest son who has celiac also had geographic tongue, and his has disappeared since going gluten-free. I'm hoping to see improvement with mine as well. There are several articles written on the connection between GT and celiac disease.
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,767
    • Total Posts
      932,298
  • Member Statistics

    • Total Members
      64,238
    • Most Online
      3,093

    Newest Member
    CrystalZ
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thanks Barry. It's just up the road from me and it's a place I know very well. Some of my family were there last week for a gig, it's a frightening thought.  You are most definitely not alone and you've found a good site. There are a lot of accounts on here which helped me join the dots and work out what was happening with my own reaction to gluten. The move to a new job may not be coincidental btw, additional stress is linked to changes in celiac presentation. In women pregnancy can bring it about. It makes it easy to dismiss it as stress related. If you've found the answer now you can look forward to healing and hopefully some unexpected health dividends if it's affecting you in multiple ways. I stopped eating gluten and found near immediate relief from brain fog and a lightening of depression. What I didn't count on was the disappearance of chronic back pain that I'd had off an on for many years. There were a lot more examples like that as my time on the gluten-free diet progressed.  The rheumatoid pain in my hand went too. I put together an faq for the diagnostic side awhile back which may be of some additional help. or at least offer some good links to further reputable info:  
    • Microwave potatoes are filling. 6 minutes on 50% power then turn and another 6 minutes . For large sweet potatoes increase the to 8  each side. Canned gluten-free salmon, tuna etc with minute rice ready microwaveable. Libbys makes peas and green beans gluten-free naturals canned. Arrowhead Mills makes instant breakfast rice and shine as well as quinoa rice and shine, just add water and microwave. Instructions say stove top but 1/4 cup with 3/4 water microwave 4 minutes, with paper towel over top to catch water overflow. Eggs are great scrambled in microwave too. Stir up 2 eggs. Put in ceramic mug. Cover microwave 2 minutes.  Look for gluten free rice crackers too. Fresh fruit or gluten-free dried fruit. gluten-free nuts and seeds.  Survival tip, eggs need no refrigeration if you coat them with mineral oil when raw. Can last month's this way, Google it.
    • Saturday was the symptoms I have been feeling amplified big time:  Terrible nausea, head ache, dizziness, stomach gurgling, fatigue. And the constipation/strange BMs.  Wasn't prepared for that one.  I sort of took Sunday off and felt a bit better, now the dizziness is ramping up again.  I'm planning on taking a break once a week. Hopefully that's ok.  I do have an appointment with a GI for June 7th. There were no openings until mid July when I called and while I was speaking to the nurse someone must have cancelled and so I grabbed the early June appointment.  But this is all like deja vu. This is exactly how I would feel growing up and most of my life.   Headache, dizzy, nausea.  And the sores on the roof of my mouth!  Ugh. 
    • Also, can I buy the udi's and keep them in the fridge, or do they need to be frozen? 
    • Ennis_TX Thanks so much for your reply.  I am just not prepared to go through the medical procedures required to confirm I have it. I will just have to be satisfied in knowing that I feel better avoiding gluten. My wife recently began working with a gal that does have full blown, and did have the biopsy and everything, and now she is passing lots of advice to me through my wife. Your experiances do seem to be similar to mine. I have the mental stuff and the tingly fingers too! AS you know, there are just SO many side effects, it easy to confuse it with any number of other diseases/food intolerances. Thanks again and keep up the good work! 
  • Upcoming Events