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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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icelandgirl

Pelvic Pain And Discomfort And Peeing All The Time

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Hi Victoria!

Wow...so interesting to read through this almost 3 years later.  It has helped me to see how far I've come.  😁

I never got a good answer on this issue.  I did have more than 1 pelvic ultrasound and the only thing that ever came up was ovarian cysts in the process of resolving.  At one point I got a referral to a urologist, but the symptoms went away before my appointment so I cancelled.

Fast forward to March of 2016 when I ended up in the ER with kidney stones.  Lots of them.  I have wondered if I was perhaps passing small pieces of stone during the episodes of pelvic pressure and peeing.   

I just don't know.  I haven't had an episode like this since I passed the stones.  And I am really thankful for that.  It was so uncomfortable all the time.

I wish I had a clear answer for you.  I don't know for sure what was going on with me though.

I am so grateful to have read through this...3 years has made a big difference in how I feel!

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Hi!

so sorry about the kidney stones, they are horrible! But glad that somehow resolved your symptoms! Wow! 

I totally forgot that the whole celiac thing for me started with kidney stones. They took me out in an ambulance one day while I was teaching, the pain never really resolved until I went gluten-free, practically by accident. Had kidney stones myself and my husband has had them 2 or was it 3 times? Anyway, they are horrible, worse than childbirth, unmedicated. Childbirth at least gives you a nice result and the pain is completely resolved immediately!

so glad you are doing so much better. I love looking up these older stories, but I go crazy when there's no final post resolving the issue, or at least a nice neat follow up! I have to assume most people move on because things worked out. 

Thanks so much for replying!

Edited by Victoria1234

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I agree...I hate when there's no resolution or someone just disappears.  I always wonder.  I'm still around here for sure.  Not quite as much as 3 years ago, but I guess that's a sign of feeling better?

I am so sorry you had kidney stones as well!  They are terrible.  I passed 7 in one go at the ER.  My urologist believes that it's celiac malabsorption related.

 

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5 hours ago, Victoria1234 said:

Hi Christiana, thanks for the reply. I am both interested in the outcome of this story for curiousity and for how it relates a bit to me, 

Is your pain and pressure similar to the feeling of all your insides about to slide out onto the ground? It is similar to carrying a baby in the third trimester! I get this when I've been standing and walking for most of the day. There is also pain presenting in my Pelvic area, although I thought this was from a nerve cluster that was damaged during my hysterectomy .

Is there anything you do about this?

thanks again!

Third trimester pain is a good way of describing it!  I know someone with another gastrointestinal complaint - diverticulitis - which causes this sensation too - so it could purely be down to our gut.

What I would say is what side is you pain on? Is it pretty diffuse or is it on the left or right side?  For me, it was the left side, rather as if when I was pregnant a baby was standing on my hip/groin area.  As it was on the left a sigmoidscopy was indicated to make doubly sure nothing else was going on, after an internal pelvic scan u/s ruled out other problems.

(I note you have had a hysterectomy but have you had any of the above scans recently? - might be worth doing to give you peace of mind).

If you want to find out if it is your sacroiliac joint causing you problems, a physio or chiropractor will be able to put their finger on it (literally).  My left sacroiliac joint is very tender now but before I was shown where the joint actually was, I wouldn't have known  otherwise as the pain refers in a great part to my groin.   I nearly shot through the roof when my chiropractor touched the sacroiliac area.   The cure for that is rest and the right type of exercise, not carrying heavy loads, wearing comfortable supportive shoes etc.

Another thing that pelvic pain can be caused by is pelvic congestion.   I'm not sure if this would affect someone who has had a hysterectomy. One radiographer told me I had a lot of veins (like internal varicose veins) which might be causing me pain, although when the gynaecologist looked at me she said they were normal.  

Personally, I think in my case it is a mix of sacroiliac issues, bloating and possibly pelvic congestion!  A bit of everything in the mix!

One thing I cannot do any more is wear tight waistbands or other tight clothes.  For whatever reason this makes things so much worse.  If you are wearing tight waistbands, definitely give that a miss.

Sorry - this is a bit of a ramble, but it might throw some light on your situation.

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Hi again Victoria  - I've just read your other comment about your insides feeling like they might slip out!  Poor you!  But yes - I can identify with that.  I actually get that exact feeling when I get a UTI - are you sure you haven't got a UTI?  x

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49 minutes ago, cristiana said:

Third trimester pain is a good way of describing it!  I know someone with another gastrointestinal complaint - diverticulitis - which causes this sensation too - so it could purely be down to our gut.

What I would say is what side is you pain on? Is it pretty diffuse  or is it on the left or right side?  For me, it was the left side, rather as if when I was pregnant a baby was standing on my hip/groin area.  As it was on the left a sigmoidscopy was indicated to make doubly sure nothing else was going on, after an internal pelvic scan u/s ruled out other problems.

(I note you have had a hysterectomy but have you had any of the above scans recently? - might be worth doing to give you peace of mind).

If you want to find out if it is your sacroiliac joint causing you problems, a physio or chiropractor will be able to put their finger on it (literally).  My left sacroiliac joint is very tender now but before I was shown where the joint actually was, I wouldn't have known  otherwise as the pain refers in a great part to my groin.   I nearly shot through the roof when my chiropractor touched the sacroiliac area.   The cure for that is rest and the right type of exercise, not carrying heavy loads, wearing comfortable supportive shoes etc.

Another thing that pelvic pain can be caused by is pelvic congestion.   I'm not sure if this would affect someone who has had a hysterectomy. One radiographer told me I had a lot of veins (like internal varicose veins) which might be causing me pain, although when the gynaecologist looked at me she said they were normal.  

Personally, I think in my case it is a mix of sacroiliac issues, bloating and possibly pelvic congestion!  A bit of everything in the mix!

One thing I cannot do any more is wear tight waistbands or other tight clothes.  For whatever reason this makes things so much worse.  If you are wearing tight waistbands, definitely give that a miss.

Sorry - this is a bit of a ramble, but it might throw some light on your situation.

1. I think the pain is more diffused than on one side or the other. 

2. Sacroiliac joint sounds familiar to me, from when I was doing pt? I think this was something where one side was lower than the other. She would correct it, but it wouldn't stay put for long. 

3. I haven't had any scans in ages! 

4. Every pair of pants I have are elastic or tie right now! I'm at my mid weight. I guess I've got fat, mid and skinny clothes, lol. I'm losing a bit of weight here and there because one of my meds causes me to have a lower appetite.

5. Are you getting any help from the chiropractor?

6. Thanks so much for this food for thought. I do so hope you find an answer to your issues asap. I hate stuff like this that is seemingly so ambiguous. Much easier to just have kidney stones and get them over with, lol.

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54 minutes ago, cristiana said:

Hi again Victoria  - I've just read your other comment about your insides feeling like they might slip out!  Poor you!  But yes - I can identify with that.  I actually get that exact feeling when I get a UTI - are you sure you haven't got a UTI?  x

I've had plenty of uti's in the past, pre knowing I couldn't eat gluten, so I know how they present in my body. Peeing every 5 minutes a tiny bit with extreme pain. Not fun. They were so bad for awhile I had to take a prophylactic antibiotic every time I had sex, with lots of water. It was like, sorry honey, can't cuddle. Gotta run to take my meds!

But thanks for the idea!

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1 hour ago, Victoria1234 said:

I've had plenty of uti's in the past, pre knowing I couldn't eat gluten, so I know how they present in my body. Peeing every 5 minutes a tiny bit with extreme pain. Not fun. They were so bad for awhile I had to take a prophylactic antibiotic every time I had sex, with lots of water. It was like, sorry honey, can't cuddle. Gotta run to take my meds!

But thanks for the idea!

Just one point on this - I'm no expert but I wonder if UTIs can present differently, depending on which section of the tract is infected?   Mine tend to be lower down in the urinary tract so I don't feel like I need to go to the loo a lot when I have one, but when I pee or afterwards it hurts, and then I get that feeling of my insides slipping out - as you put it.  My point is you may have a UTI in a different part of your urinary tract to normal.  Just a thought?

1. Diffuse pain sounds like it might be bloating. Are you drinking/eating dairy?

2. Sacroiliac joint inflammation can come about for all sorts of reasons - what you are suggesting would cause it.  However, I tend to find my pain transfers to the side of my groin and pelvis - not centrally.  

Here is an interesting article which shows how it refers.

http://www.massagetoday.com/mpacms/mt/article.php?id=14394

3.  I'm thinking perhaps it might be worth having a pelvic scan if you can? Internal and external.

4. Ditto - tight clothes are a distant memory!

5.  I'm no longer seeing a chiropractor.   I was in pain for months, then one day I underestimated the height of a step down and jarred my hip.  Agony!  Went to bed for four hours to sleep off the pain -  but the strange thing was my SI joint was much better for many many months after that!

6.  I agree - all this sort of stuff is highly ambiguous.  I remember when I was really concerned about my pain - which was before I had had my scan and then sigmoidoscopy - I did a lot of online research and it seems that a lot of women get unexplained pelvic pain.  So it appears we are not alone.

If I were you I'd be inclined to pursue this with a GP, it might be a long journey but you should get some answers and peace of mind. I find unanswered medical questions only ever add to my pain - I think I must tense up with anxiety.

Cx

 

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Regarding sacroiliac joint pain - I went to physical therapy for it. They can check to see if there is a problem. If there is they teach you how to put yourself in. You do it many times a day. Eventually the problem goes away.

 

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42 minutes ago, cristiana said:

Just one point on this - I'm no expert but I wonder if UTIs can present differently, depending on which section of the tract is infected?   Mine tend to be lower down in the urinary tract so I don't feel like I need to go to the loo a lot when I have one, but when I pee or afterwards it hurts, and then I get that feeling of my insides slipping out - as you put it.  My point is you may have a UTI in a different part of your urinary tract to normal.  Just a thought?

1. Diffuse pain sounds like it might be bloating. Are you drinking/eating dairy?

2. Sacroiliac joint inflammation can come about for all sorts of reasons - what you are suggesting would cause it.  However, I tend to find my pain transfers to the side of my groin and pelvis - not centrally.  

Here is an interesting article which shows how it refers.

http://www.massagetoday.com/mpacms/mt/article.php?id=14394

3.  I'm thinking perhaps it might be worth having a pelvic scan if you can? Internal and external.

4. Ditto - tight clothes are a distant memory!

5.  I'm no longer seeing a chiropractor.   I was in pain for months, then one day I underestimated the height of a step down and jarred my hip.  Agony!  Went to bed for four hours to sleep off the pain -  but the strange thing was my SI joint was much better for many many months after that!

6.  I agree - all this sort of stuff is highly ambiguous.  I remember when I was really concerned about my pain - which was before I had had my scan and then sigmoidoscopy - I did a lot of online research and it seems that a lot of women get unexplained pelvic pain.  So it appears we are not alone.

If I were you I'd be inclined to pursue this with a GP, it might be a long journey but you should get some answers and peace of mind. I find unanswered medical questions only ever add to my pain - I think I must tense up with anxiety.

Cx

 

Gosh I hate docs so much and I always have to go to one! Every 3 months to my gyn for my chronic pelvic pain, and to the psych for my other meds. I promise I will ask the gyn about everything falling out at my next visit. I have told her about it, but she just brushed it off as something that happens when you have a hysterectomy sometimes. And they do test my urine each visit, but I'm not sure what they test it for, lol. Not pregnancy!

i just got a new pcp. Did a yearly check up and did not bring a list with me. Stupid me! I know my cholesterol is high, but it's been high since it was first tested when I was 16. They say some people genetically just have high readings. My dad did and he always ate low fat. That's the only things they told me, but I know now from this board I should ask to actually see the results.

thats interesting your accident reset your body for a few months. I bet that was very unexpected!

now off to read your article :) thank you!!!!!!

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20 minutes ago, tessa25 said:

Regarding sacroiliac joint pain - I went to physical therapy for it. They can check to see if there is a problem. If there is they teach you how to put yourself in. You do it many times a day. Eventually the problem goes away.

 

That's awesome, thanks!

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    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com