Dr hasn’t called me back, but what do you think?

[Babzo]

I had an endoscopy last Monday that yielded some biopsies, one of which the dr said was consistent with celiac (Marsh 3b).  They had me come in for a blood test to confirm, but now they haven’t called back to talk to me about it. These are the labs that show in my portal. This and the positive biopsies seems pretty positive to me but now I am paranoid that we haven’t actually found the issue. What is your take on it?

https://imgur.com/a/ikQBC2q

[trents]

Your biopsy and your strongly positive tTG-IGA agree. What other evidence are you looking for? Are you questioning this because you are asymptomatic?

[Babzo]

No I am very symptomatic, but I also have some issues that I don’t know if they are related, and I am a very anxious person so the fact that I haven’t been contacted is stressing me out. Wouldn’t they call me to tell me to start eating gluten free if they thought it was necessary? I see my GE on the 10th I just wish I had been given some sort of confirmation.

[trents]

There are only two kinds of tests that are used to diagnose celiac disease and you have had both of them run and they were both positive. So, if you begin a gluten-free diet now there is no risk for sabotaging further testing for celiac disease. So, I see no reason for you not to begin a gluten-free diet. If you have other things going on besides celiac disease, testing for they will not be affected by going gluten free.

 

Edited February 25, 2022 by trents

[knitty kitty]

8 hours ago, Babzo said:

No I am very symptomatic, but I also have some issues that I don’t know if they are related, and I am a very anxious person so the fact that I haven’t been contacted is stressing me out. Wouldn’t they call me to tell me to start eating gluten free if they thought it was necessary? I see my GE on the 10th I just wish I had been given some sort of confirmation.

Tell us about the issues you are concerned with and we'll see if they are typical Celiac symptoms.  

[Babzo]

15 hours ago, knitty kitty said:

Tell us about the issues you are concerned with and we'll see if they are typical Celiac symptoms.  

I have a feeling they may be due to the malabsorption part of celiac. Very weak, pale, sometimes a little yellowish in my eyes, bruise very easily, lethargy. Last time I saw my hematologist (before my endoscopy) he said I had low platelets. My eyes are also sunken in a lot of the time. 

Just now, Babzo said:

My eyes are also sunken in a lot of the

Also my obgyn wants to do a laparoscopy to check for endometriosis as I have just about every standard symptom of that too.

[trents]

11 minutes ago, Babzo said:

I have a feeling they may be due to the malabsorption part of celiac. Very weak, pale, sometimes a little yellowish in my eyes, bruise very easily, lethargy. Last time I saw my hematologist (before my endoscopy) he said I had low platelets. My eyes are also sunken in a lot of the time. 

Are your liver enzymes high? AST, ALT, billirubin?

Edited February 26, 2022 by trents

[Babzo]

19 minutes ago, trents said:

Are your liver enzymes high? AST, ALT, billirubin?

I’ve not had those tested I don’t think, I think I misplaced the results from that hematologist visit. I assume they will run some more tests after my follow up with my GE on the 10th

[trents]

16 minutes ago, Babzo said:

I’ve not had those tested I don’t think, I think I misplaced the results from that hematologist visit. I assume they will run some more tests after my follow up with my GE on the 10th

Do you have online access to your test results?

[Babzo]

Just now, trents said:

Do you have online access to your test results?

I looked but the only one I see is bilirubin and that just says negative 

[Russ H]

Bruising easily may be a result of low platelet count. It seems that thrombocytopenia can be caused by coeliac disease, and generally resolves on a gluten free diet.

For example: https://pubmed.ncbi.nlm.nih.gov/20455043/

 

 

[knitty kitty]

@Babzo,

Those do sound like symptoms of vitamin and mineral deficiencies.  

Vitamin C deficiency causes yellowing of the whites of your eyes (sclera), as does anemia and B12 deficiency.  

Easy bruising can be caused by both Vitamin C deficiency and B12 deficiency.  

Dehydration can cause sunken eyes. 

Endometriosis development is related to low Vitamin D.  Do get your Vitamin D level checked.

Gallbladder problems and pancreas problems might be causing some problems, too.  These organs need lots of Thiamine, Vitamin B1.  Thiamine is safe in high doses.  Perhaps taking 500 mg would be beneficial.  Doctors can give thiamine in an IV.  

Supplementing with all eight essential B vitamins would be beneficial.  

I hope you feel better soon.  Keep us posted on your progress.

 

4 hours ago, Babzo said:

I have a feeling they may be due to the malabsorption part of celiac. Very weak, pale, sometimes a little yellowish in my eyes, bruise very easily, lethargy. Last time I saw my hematologist (before my endoscopy) he said I had low platelets. My eyes are also sunken in a lot of the time. 

Also my obgyn wants to do a laparoscopy to check for endometriosis as I have just about every standard symptom of that too.

 

[Wheatwacked]

1 hour ago, knitty kitty said:

Endometriosis development is related to low Vitamin D

Before undergoing a serious surgery like a laparoscopy, you might want to give yourself a chance to heal with GFD and reversal of malnutrition. If the obgyn insists, stall. A few weeks delay will not change the surgical outcome. With GFD and the right nutrients your symptoms should subside before the pain from the surgery would have and surgery will not solve the problem, only verify it exists. Iodine absorption is affected by damaged villi and deficient iodine can be a cause of endometriosis.  A urine test or tracking how much iodine you eat are the only ways to calculate personal iodine intake. The RDA is 220 mcg for pregnant women with upper limit at 1100 mcg for all adults. "Moreover, about 58% of women in childbearing age had <150 µg/L UIC, which is below the RDA for adult, pregnant, or lactating women." (Iodide Transporters in the Endometrium: A Potential Diagnostic Marker for Women with Recurrent Pregnancy Failures

   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

Quote

 immune factors promote transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial-like cells... A problem with the immune system may make the body unable to recognize and destroy endometrial-like tissue that's growing outside the uterus.   https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

Quote

Conclusion: These findings suggest possible abnormal iodine metabolism and a deficiency of iodine in endometrial tissues from some of the women with reproductive failures. We hypothesize from these findings that inorganic iodide and/or iodine is required for optimal cellular function in reproductive tissues, and that iodide transporters may potentially be used as a marker for infertility or for probing potential localized iodine deficiency that may not present in a typical thyroid panel analysis....https://www.karger.com/Article/FullText/508309

[Babzo]

2 hours ago, Wheatwacked said:

Before undergoing a serious surgery like a laparoscopy, you might want to give yourself a chance to heal with GFD and reversal of malnutrition. If the obgyn insists, stall. A few weeks delay will not change the surgical outcome. With GFD and the right nutrients your symptoms should subside before the pain from the surgery would have and surgery will not solve the problem, only verify it exists. Iodine absorption is affected by damaged villi and deficient iodine can be a cause of endometriosis.  A urine test or tracking how much iodine you eat are the only ways to calculate personal iodine intake. The RDA is 220 mcg for pregnant women with upper limit at 1100 mcg for all adults. "Moreover, about 58% of women in childbearing age had <150 µg/L UIC, which is below the RDA for adult, pregnant, or lactating women." (Iodide Transporters in the Endometrium: A Potential Diagnostic Marker for Women with Recurrent Pregnancy Failures

   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

The main issue though is that my period lasts 7-10 days and always has, and requires hourly pad changes. doubt eating gluten-free can fix that, I’ve only developed celiac recently. 

[knitty kitty]

2 hours ago, Babzo said:

The main issue though is that my period lasts 7-10 days and always has, and requires hourly pad changes. doubt eating gluten-free can fix that, I’ve only developed celiac recently. 

So did mine.   You've been diagnosed recently, but you've probably had Celiac Disease long enough to incur vitamin and mineral deficiencies.  It's when our vitamins and minerals get low the our bodies start malfunctioning and symptoms appear.  Celiac Disease is not like the flu, where once the flu or virus is caught you get sick immediately.  Celiac is insidious and subtle.  We can live for years with symptoms easily ignored that we chalk up to the stress of daily life.  Sometimes another illness like Covid or a trauma will precipitate more severe Celiac symptoms as our bodies run out of micronutrients faster trying to cope with both.  

Correcting nutritional deficiencies is part of proper follow up care for us.  Even if blood tests don't show a deficiency, supplementing with vitamins and minerals helps us heal faster and better than trying to absorb nutrients from damaged intestines.  And on a Gluten Free diet, physical things we thought were par for the course disappear and were actually symptoms related to Celiac, like heavy periods.  

Doctors are not trained in vitamin deficiencies outside of alcoholism.  Doctors are trained to prescribe pharmaceuticals and chop us up.  

Seriously, get your Vitamin D and other vitamins and minerals checked for deficiencies.  

[Wheatwacked]

2 hours ago, Babzo said:

and always has

Not to be confrontational, but you've also always eaten gluten. I could never breath through my nose, always snored. According to doctors it is just my norm. It had an advantage though, noxious odors that had others scringing did not bother me, a superpower. Yet since I started GFD at 63, I now am a constant nose breather and rarely snore. Sleep apnea that my brother had surgery for, and both my brother (the surgery only helped for a while) and son have CPAP for and pre-GFD constantly woke me is gone.

What I find thought provoking it that while the NHANES studies state iodine in the population is sufficient, the study I quoted found 58% women of childbearing age were not. That's a big gap. The whole iodine is bad movement started from the Wolff-Chaikoff study at UC Berkeley in 1948 (lots of DOD research back then) at the beginning of the Nuclear Age. France recently is handing out iodine to its citizens.

[knitty kitty]

10 hours ago, Babzo said:

The main issue though is that my period lasts 7-10 days and always has, and requires hourly pad changes. doubt eating gluten-free can fix that, I’ve only developed celiac recently. 

Thought you would find this interesting....

"The Relationship between Vitamin D Status and the Menstrual Cycle in Young Women: A Preliminary Study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6265788/