CoachAng

Welcome Angie!

I have always had C rather than D -- I believe it is one of the reasons I went undiagnosed for so many years -- it is unfortunate that most primary docs still believe that those with Celiac must be underweight with D -- so many of us retain weight with C.

Improvement can take time - it took many years to cause the damage - makes sense it could take time to heal. Even small improvements are worth noting - watch for them. Nail/Hair changes; gums may improve, etc, etc, etc.

Good Luck to you

Thank you, Lisa! Funny you say small changes. I have had less night sweats (not totally gone yet), my finger nails are already stronger (did not think I could see a change in my nails in 2 weeks!), and minor improvement in overall 'feel' of hair. Ends are still dry, probably due to lack of vitamins over the years. I will definitely keep watching the small stuff because in the end, those small things add up to lots of relief! THANK YOU for your insight!!

I am so new to all of this, today is day 40 going gluten free, with a few unwanted glutenations along the way! This is a whole new world, a whole new life! In short I have been sick for along while but 5 years with symptoms I beleive related to Celiac Disease. I have had many tests done over these years,by many doctors trying to figure out what is "wrong" with me from cat scans, blood work, x-rays, MS testings,spinal taps, hormone testing, gall bladder testing....not one doctor ever mentioned to me that maybe I had an allergy or an intollernce to foods. In short about two months ago I sat down to rock my 1 year old, turned on the TV and there was Dr.Oz with guest Elizabeth from The View, talking about Celiac Disease and the symptoms, as I sat and watched the symptoms being explained I could check off every single one of them and then some...(if anyone is interested I could list them for you)right then a light bulb went off in my head...this was a sign nothing to loose, maybe something to gain, but absoutlly nothing to loose!! So that was it for me the rest of the day I watched what I ate, and then the next day and every day since then...after 72 hours the gall bladder pain and stomach pain started to subside, I had a burst of energy, I was running with my 3 year old on a "walk", I could hug my husband without pulling away because it was to uncomfortable...I can go on and on...but the best thing is I am feeling better then what I had in a very long time, with no help from the doctors! (Still thinking of billing them the $7K in medical bills accumulated/ but they are good samaritians after all, right!) I am by no means healed, but I feel as if I am healing!

So about two weeks ago I went to see an allergist so excited to get this show on the road...I want to know everything so I can fix it, and move on. In short the allergist came up empty handed..I had NO blood work done for the Celiac Disease because they informed me that I would have to be digesting it for the tests to come out correctlly. So my friends this is a PROBLEM for me...because NO way would I take a million dollers to feel the way I had felt before all of this.

Does having the underlined diagnosis sought out worth my pain and suffering?
What if it showed negative? But what if it shows positive?
I have a husband that is a gluten 'LOVER', 5 kids that go nuts for cakes/brownies/breads...you name it they digest it!

The two times that I am well aware of that I was contaminated was not pleasent for me or for them but I am DROWNING in possiable contaminations here in this household...Do I move out...?LOL

I just want support/someone who gets all of this, gets me. My family just does not understand as I am making there turkey sandwhiches with plastic baggies over my hands and itching like crazy, my throat swollen and snot draining, foggy head as Im pouring there gravy on there mashed potatoes...later washing all the dishes...

Is having the diagnois going to be worth it, is my main question, I guess,? Does that help with support in the long run through all of this? Do your families/households just take it out completelly? How do I cook for all of them while I feel like S*&%, with a smile on my face knowing what I am going to feel like by the end of there dinner!

AHH, THANK YOU FOR LISTENING TO MY BABBLES!
Cathleen

Hi! My name is Angie! I would be interested in learning more about the symptoms you've experienced. My 'obvious' symptoms just started back in May 2012, but now looking back, I am thinking I have had less obvious symptoms for years!!! My recent issues in May were bladder-related, but thought it was UTI issues or something. I have now been through countless rounds of bloodwork, CT scans with barium and IV die-contrast, GYN ultrasound, CA-125 bloodwork to test for markers with uterine cancer, visited urologist, OB-GYN, PCP, and then referred to pelvic physical therapy due to immense abdominal tension. I still have pain but cannot determine if mine is bowel, vaginal, or urinary pain. Here is the kicker - I always thought Celiac/gluten sensitivity would bring bouts of diarrhea because the body would try to rid of the poison. I am a very constipated person. Found out that constipation is a BIG symptom for many. Well, my brother is HIGHLY allergic to gluten - never thought I was at-risk because our symptoms are not the same. So......I sought assistance from an integrative doctor. He is doing bloodwork (7 vials, stool sampling and saliva sampling). He is checking for several things (to rule out other issues, too). Like you, I am new to this. I gave up gluten the day after my bloodwork and will get the results tomorrow. I have felt some improvement but not TONS. I know it takes time and CC is always a possibility. I appreciate any info you can offer (or anyone else on this thread!) THANK YOU!!!!!!!

Celiac is a head to toe disease because of malabsorption.

Since you are already reading what Karen has posted, read this too-- and see how all your symptoms may be linked:

http://www.cureceliacdisease.org/medical-professionals/guide/symptoms

Very interesting material. I am going to copy these links to my desktop for reference. Interestingly, I checked my bloodwork from last fall (2011) and my white cell count was WAY LOW and I was also very low on potassium. My doc said everything looked okay and since I was in great physical shape, it was nothing to worry about (the WCC and low potassium). At the time, I was eating 2-3 bananas per day and other sources of potassium.

Starting to see some patterns forming here (was in ER for heart palpitations in October 2011, low white cell count since at least 2006, acne since my mid-20's until current, constipation with times of very soft stools, and more). THANK YOU ALL for the information!!!!! You have made my day a better one!!!!!

I doubt your bladder is damaged, especially if your tests are all normal. Don't start worrying about that or anything else until you know what the underlying cause may be---which could very well be gluten/celiac.

(BTW, I thought Lisa had posted the celiac panel list on this thread (my mistake-- I am answering in two threads at once and they both involve the celiac panel) )


Karen has provided the link which explains the celiac panel.

THANK YOU!!!! Trying not to worry needlessly about the bladder. The urologist did various CT scans, bloodwork, urinalysis, etc. All were fine, except scaint traces of blood in urine (microscopic). He did not feel the need to test further on the bladder, so no scope or anything done. I, deep in my heart, believe the pain is stemming from the stomach/bowels as I am not regular nor never have been for YEARS!!!! I mentioned this earlier, I never knew constipation could be a sign of celiac - I assumed it would be IBS-like symptoms since the body would try to rid of the gluten. Definite learning process for me. I only know limited amounts of info on gluten - enough to cook for my brother when he is here to avoid cross-contamination. Never would have known the overall effects on other organs, including the bladder. THANK YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I know you said you did your research, but in case you missed this

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

Thank you for the link. Going to review it now! I appreciate any help/info provided!