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Andi5

Ultrasound Results...

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I got my ultrasound results today ... came back with "no findings".

I also finally got the test results from my biopsy resubmitted to my doctor. She emailed me back saying quote "The biopsy did not show celiac. There is no additional testing. Biopsy is the gold standard."

I posted about my struggles getting a diagnosis a couple days ago but to give you a brief summary, my symptoms started when pregnant three years ago and include:

- Intense spasms under my right rib

- Pain in my back

- Extreme swelling in my upper abdomen

- Cramping after eating anything processed or wheat

- Fatigue

- Headaches

- Lack of motivation

My HIDA scan showed an ejection fraction of 94%. While "functional" there is some controversial new studies that show that overactivity in gallbladders can be a symptom of disease.

(http://www.medscape.com/viewarticle/705669)

My mom is having her gallbladder removed next week. She has had the same exact symptoms, however, they found polyps in her gallbladder so they are recommending surgery. I have considered going to her doctor for a second opinion but it would be out of network for us.

Eating gluten-free has helped with most of my symptoms (except the spasms and pain in my back) so I do think I have a gluten intolerance. I question her use of the term "gold standard" as I have read that sometimes it takes several biopsies to confirm celiac. She has also refused to do a blood panel for celiac, claiming that there "ISN'T a blood test for that". I am also concerned by her easy dismissal because my grandmother is diagnosed Celiac... so it runs in my family.

My husband and I have been putting off having more children because my symptoms were so bad during my pregnancy but I feel like I am putting my life on hold searching for an answer that will never come. After today, I also feel that my doctor is being extremely dismissive of the pain I am having.

Any suggestions for how I should move forward? Should I continue tolerating the spasm pain and continue on with a gluten-free lifestyle to prevent the other symptoms? Or should I continue pushing for answers?

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Also... do I move forward with having more kids? Our son is three years old and I've been having baby fever for some time. I'm just scared that the symptoms will get worse again... possibly putting a baby at risk. Then again, I could be chasing answers for several more years.

It's so hard to deal with doctors telling you you're "fine" when you know you aren't.

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Do continue with the diet if it is helping. Be careful about cross contamination and it would be a good idea to avoid dairy and soy until you have healed. You also IMHO need a new doctor. If you do want more celiac testing you do need to get back on gluten until that is done.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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The Joplin tornado was ten months ago. Your condition may have changed since then. If you are really looking for a definitive answer I would switch doctors and ask for a celiac blood panel to be drawn. Of course, this would require you to resume eating gluten for a couple of months. Even going back to gluten may give you the answers you are looking for - you may find it intolerable to eat gluten now; this is quite common in those who are sensitive to gluten. It seems like your body fights it harder after it has had some relief from a gluten free diet.

I cannot give any advice about your gall bladder since I am unfamiliar with its problems. I do know that gall bladder problems and celiac disease often ride in tandem. I have read many posts of people who have had their gallbladders removed and experienced no relief of symptoms. I have heard of people whose gallbladder symptoms have resolved after being gluten free. Of course, there are also some that don't.

I do hope you make some headway in getting correctly diagnosed. If nothing else, give the gluten free diet a strict 3-6 month trial and see how it helps.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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