New To Group And Celiac

[Amy Joe]

Good after noon. I was hoping that when my Endo called with lab results, it was to say we need to keep checking.....checking to see why after 100,000IU of Vitamin D per week my levels were still low.

She called to tell me that indeed my levels are now up to 41, my Thyroid level is good after the adjustment BUT and there always seems to be a but. My blood work came in positive for Celiac. So now I wait for a referral to have the biopsy done.

She thought it odd I don't or didn't complain about problems when I eat. Oh I had for many years but my OLD PCP said after what I thought was every test that it's just ME. A mom of 3 and a busy life!

Today I find myself feeling a bit overwhelmed. For I am just 5 months post op from brain surgery to treat Chiari. I am doing great with the recovery. Trying to regain strength but it has been a struggle with the Vitamin D Deficiency, regulating the Hashimoto's. I have been taking in extra minerals and vitamins however it has not helped and I guess I know why now.

I am suppose to continue with my current diet till the biopsy. Could you please tell me if some of the symptoms I am having could be from Celiac?:

My legs, feet and arms ache very deep into my bones

I have deep shivering chills all the time, hot showers and baths do not help

My appetite is strange, I can go for days with little to eat and then the next, I can not eat enough

I think I get dehydrated easy and often.

I tire easily and my body gets fatigued. I can do a days work around the house and then need a days rest because my legs hurt.

I am very pro-active with lab work. I have SO many doctors and specialists. I really did not want to add any new ones, kinda trying to not have the need for so many.

I look forward to getting to know you all. I have been a member of a Chiari on-line support group for a while.

Amy Joe

[Roda]

I had very vague gi symptoms with only heartburn/acid reflux. I have had problems with constipation and bloating all my life and just thought it was normal for me. My main problem was iron deficiency anemia, low ferritin, and fatigue all the time. Was told the anemia was from heavy periods (which were not) and that I work full time and have two kids. The only reason I stumbled upon the celiac was I was wondering if there was a connection with the anemia/low ferritin and hashimoto's disease. When I would look the two up I kept finding references to celiac. The more I read the more I began to think I had it. I was sort of in denial for about five months before I asked my endocrinologist about it and for a test. On some subconscienous level I thought I might have it, but was still suprised by the positive blood work. The biopsy confirmed diagnosis. In January I also found out I was vitamin D deficient. I've been taking 50,000 iu once a week and now I feel great! I still have low ferritin and not sure what I'm going to do about that yet. I can't tolerate alot of the oral iron. Just recently I started having symptoms of overmedication from my thyroid meds. I guess the villi are healing and I am absorbing my meds better. This has never happend to me in the 9 yrs I have had hashimoto's disease. It reinforsed to me that the diet is working and I am even more commited to sticking to it. I am glad to hear you are doing well after your surgery. Hopefully once your gluten free you will feel even better. Just remember if you are going for a biopsy keep on a gluten diet so you get an accurate test. Also I think it is recommended to have the doctor take at least 6 samples all from different areas.

[gfwb]

Welcome to the group. I had a lot of the same symptoms that you listed, but I was lucky enough that I didn't get any symptoms until my youngest had left for college. I can't imagine trying to care for children when you feel bad all the time. The thing with all the symptoms that you listed are that you don't just wake up one day and feel tired and achy. It is a slow, cumulative process. I just kept getting more and more tired, more and more achy, and more and more bloaty. I thought it was just what getting old felt like.

Once I was diagnosed, I jumped on the gluten free bandwagon and never looked back. The biggest thing that helped me was the book, The Gluten Free Bible. After reading it, I felt like living gluten-free was something I could handle.

Now, two years later, I feel like I have my life again, my husband has his partner again, and our grown children have their mom back.

I hope you see improvement on your symptoms soon.

[Rebecca's mom]

You will feel so much better once you have been on the gluten-free diet! And don't let ANYONE tell you that a gluten-free diet is hard to follow and/or maintain. For those of us who can tell almost immediately when we have been "glutened", I think you will find that we will do ANYTHING to prevent gluten ingestion! Incidentally, the only symptom that I had was DH; our daughter - who was the first one diagnosed - had NO symptoms, yet had Borderline Stage IV damage to her intestines!

Welcome to a wonderful, healthier phase of life - you're going to do just fine -

Teresa Koch

Fort Worth, Texas

[Amy Joe]

Well I had the biopsy done. Should get the results late next week. They did find stuff while in there but not sure what it means.

1. Location: Duodenum

Findings: Normal

2. Location: Stomach

Findings: Erythematous (Hyperemic)

3. Location: Stomach

Findings: Normal

4. Location: Esophagus

Findings: Hiatus hernia (nurse told me LARGE)

5. Location: Esophagus

Findings: *Z line

My B12 blood test came back @ 187. Over the past 5 months it has gone from 272 to 219 and now 187. GI did further blood work to check for PA. I do not know if my Sed Rate would fall under GI or Endo but that was slightly elevated @ 25.

I really do not like the wait till everything is in.......My Endo Dr Baker, I love her says just be patient. I swear this stuff is harder then having the brain surgery.

I continue to have a good day: I can clean ect....then in bed for 3-4 because my bones and body hurt deep inside and I am freezing.

If you all have any ideas, would love to hear them.

Amy Joe