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Ida From Nova Scotia,Canada

Ida Oldford
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Ida Oldford Rookie
Ida Oldford
Posted

I am awaiting for the results from recent bloods tests for diagnosing celiac disease. Wondering if anyone has these symptoms. I have severe pain across my rib cage under my breasts and in my belly button. This appears to be radiating to my back. It starts as soon as I get up in the morning and by supper time I can no longer sit and have to lay down on my side to get any comfort. Standing or walking  by the end of the day is very painful as well.I have had this issue for about 3 months and it is getting worse. I started a gluten free diet a couple of days ago. Wondering if anyone else had this painful issue.

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trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Ida!

The blood tests are normally only the first stage of testing for celiac disease. Your physician may very well wish to order an endsocopy with biopsy to check for the damage to the villi that line the small bowel. This damage is the hallmark of celiac disease. So, I would caution you against beginning the gluten free diet until you know whether or not the physician will want to order this second stage of testing for confirmation. If celiac disease is your problem, then starting a gluten free diet ahead of the completion of further testing will invalidate the testing since it would allow for healing of the villi to begin. Go back on regular amounts of gluten until you can discuss this with your physician. If your serum antibody test scores are high enough, the physician may wave the endoscopy with biopsy. In any event, an endoscopy is probably in order to check for upper GI problems related to the pain you describe which is atypical for celiac disease. Do you have other symptoms that prompted the blood antibody tests to check for celiac disease?

Edited by trents
Wheatwacked Veteran
Wheatwacked
Posted
(edited)
4 hours ago, Ida Oldford said:

I have severe pain across my rib cage under my breasts and in my belly button.

Other possibilities are endometriosis or ovarian cancer.  Is the gluten free diet helping? It is a shame on our medical systems that doctors don't consider quality of life while they try to prove you are not sick from gluten.  Even if not Celiac, it could be Non Celiac Gluten Sensitivity but that diagnosis requires ruling out Celiac first then seeing if the gluten free diet improves symptoms. If you do continue to eat gluten free you will need to do a Gluten Challange for 2 weeks if your doctor wants a biopsy.

"On the other hand, recent studies have demonstrated that the risk of colon cancer, ovarian and breast cancer is low in patients with celiac disease. It has also been demonstrated that a strict GFD exerts a positive effect in reducing the cancer risk." https://www.spandidos-publications.com/10.3892/ijfn.2022.25/download#:~:text=Women with celiac disease have a,developing female hormone‑related cancer.

“Wheat, rye, and barley can be harmful to women with endometriosis,” Hartung said. “Going gluten-free is often recommended for women with endometriosis. Gluten can cause hormone imbalances and inflame organs.” Here are ten foods Hartung recommends endo women should stay away from:

Edited by Wheatwacked
Ida Oldford Rookie
Ida Oldford
Posted
  • Author
3 hours ago, trents said:

Welcome to the forum, Ida!

The blood tests are normally only the first stage of testing for celiac disease. Your physician may very well wish to order an endsocopy with biopsy to check for the damage to the villi that line the small bowel. This damage is the hallmark of celiac disease. So, I would caution you against beginning the gluten free diet until you know whether or not the physician will want to order this second stage of testing for confirmation. If celiac disease is your problem, then starting a gluten free diet ahead of the completion of further testing will invalidate the testing since it would allow for healing of the villi to begin. Go back on regular amounts of gluten until you can discuss this with your physician. If your serum antibody test scores are high enough, the physician may wave the endoscopy with biopsy. In any event, an endoscopy is probably in order to check for upper GI problems related to the pain you describe which is atypical for celiac disease. Do you have other symptoms that prompted the blood antibody tests to check for celiac disease?

Weight loss, no appetite,constipation.fatigue and the back pain and rib pain.One dr told me the rib pain could be Coscochondritis . I went for a pancreatic CT scan but nothing showed.

knitty kitty Grand Master
knitty kitty
Posted

@Ida Oldford,

Costochondritis can be caused by a deficiency in Thiamine Vitamin B 1.

Weight loss, no appetite (anorexia), constipation, fatigue and pain are all classic symptoms of Thiamine deficiency.  These are all symptoms I had when I was Thiamine deficient prior to my Celiac diagnosis.

Since Thiamine deficiency is usually seen in alcoholics, doctors don't realize nor recognize that Thiamine deficiency can occur in Celiac Disease. Because Celiac Disease damages the small intestine where vitamins are usually absorbed, patients should be checked for vitamin and mineral deficiencies.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

I corrected my Thiamine deficiency with over the counter Thiamine supplementation.  Thiamine Hydrochloride, Benfotiamine, Allithiamine and Thiamax (TTFD).

Hope this helps!

Wheatwacked Veteran
Wheatwacked
Posted
20 hours ago, Ida Oldford said:

One dr told me the rib pain could be Coscochondritis

 Coscochondritis: inflammation of the cartilage that joins your ribs to your breastbone 

Thats just giving a name to a specific spot of inflammation, a subset of all your other inflammations.  I don't believe each of your complaints is triggered by separate causes. The GFD and thiamine may resolve most of them without other interventions, other than malabsorbtion deficiencies.  Lots of thiamine and vitamin D, to modulate the autoimmune response and improve your outlook on life, is a good place to start.

 Vitamin B1 and Auto-Immune Conditions "“Thiamin or Vitamin B1 may be the missing link to treating autoimmune disease and autonomic dysfunction... Debilitating fatigue is one of the most common complaints" 

Keep the Faith. Have a good New Year.

 

 

Ida Oldford Rookie
Ida Oldford
Posted
  • Author
12 hours ago, knitty kitty said:

@Ida Oldford,

Costochondritis can be caused by a deficiency in Thiamine Vitamin B 1.

Weight loss, no appetite (anorexia), constipation, fatigue and pain are all classic symptoms of Thiamine deficiency.  These are all symptoms I had when I was Thiamine deficient prior to my Celiac diagnosis.

Since Thiamine deficiency is usually seen in alcoholics, doctors don't realize nor recognize that Thiamine deficiency can occur in Celiac Disease. Because Celiac Disease damages the small intestine where vitamins are usually absorbed, patients should be checked for vitamin and mineral deficiencies.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

I corrected my Thiamine deficiency with over the counter Thiamine supplementation.  Thiamine Hydrochloride, Benfotiamine, Allithiamine and Thiamax (TTFD).

Hope this helps!

 

Tks for the information 

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trents Grand Master
trents
Posted

Ida, several of your symptoms point to some kind of systemic inflammatory process going on. Has your doctor run tests for such, like CRP and ESR?

Ida Oldford Rookie
Ida Oldford
Posted
  • Author
12 hours ago, Wheatwacked said:

 Coscochondritis: inflammation of the cartilage that joins your ribs to your breastbone 

Thats just giving a name to a specific spot of inflammation, a subset of all your other inflammations.  I don't believe each of your complaints is triggered by separate causes. The GFD and thiamine may resolve most of them without other interventions, other than malabsorbtion deficiencies.  Lots of thiamine and vitamin D, to modulate the autoimmune response and improve your outlook on life, is a good place to start.

 Vitamin B1 and Auto-Immune Conditions "“Thiamin or Vitamin B1 may be the missing link to treating autoimmune disease and autonomic dysfunction... Debilitating fatigue is one of the most common complaints" 

Keep the Faith. Have a good New Year.

 

 

Tks so much for sharing this helpful information. 

Wheatwacked Veteran
Wheatwacked
Posted

I just remembered watching a podcast by Dr Mark Hyman in which he in passing mentioned successfully using activated charcoal on a patient to absorb toxins and sweep them out. Found this link for you, there are many more. In the ER they use it instead of vomiting for caustic poisoning.

Natural Peptic Ulcer Relief

Ida Oldford Rookie
Ida Oldford
Posted
  • Author
21 hours ago, trents said:

Ida, several of your symptoms point to some kind of systemic inflammatory process going on. Has your doctor run tests for such, like CRP and ESR?

I am not sure but I am hoping as I told him about my Coscochondritis.

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      is my cleiac disease gone?

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      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
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      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
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      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
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