Possible celiac?

[StaleyFam89]

I am a 30 yr old female. I went to my doctor after abdominal pain, chronic constipation, extreme fatigue, brain fog and after losing over 20 pounds over the last 6 months despite increasing my calorie intake. I was sent to a gyno who diagnosed me with ovarian problems and I had a complete hysterectomy 2 months ago. After the surgery I lost 5 more pounds, putting me clinically underweight, during recovery and hit a wall as far weakness and fatigue. I went back to my GP who wanted to send me to an oncologist and sent me for a mammogram. My blood work previous and during this time screened negative for diabetes, thyroid problems or stomach bacteria. They showed deficiencies in Vitamin B, Vitamin D, iron and ferratin despite taking supplements, my BUN level was low and also my SED rate continued to elevate during this time. I was so desperate to find answers I started scouring the internet and came across celiac disease. It seems to check all the boxes for my symptoms, but when I brought it up to my GP she rolled her eyes and said she'd do the test but don't be surprised when it's negative. I am so desperate to feel better I am considering going gluten free on my own while we wait for the blood test. How can I get my doctor to take me and my symptoms seriously? Does anyone else have any experience with doctors jumping to cancer before a celiac diagnosis? 

[knitty kitty]

Welcome to the forum, @StaleyFam89! 

First, be aware that you need to stay on a gluten containing diet for blood tests which test for Celiac antibodies.  Keep eating gluten for an endoscopy which checks for Celiac damage in the small intestine.  If you quit eating gluten before all tests are done, your body will stop making the antibodies against gluten that the blood tests look for.  You will get skewed results and possibly false negatives.  Your endoscopy may not show as much damage to the small intestine caused by Celiac Disease.  

Secondly, find a doctor familiar with Celiac Disease.  Perhaps a Gastroenterologist will be more knowledgeable about Celiac Disease diagnosis.  A nutritionist might be able to tell you about Celiac savvy doctors.

Being low in Vitamin B12, Vitamin D, iron and ferritin are common presenting symptoms of Celiac Disease.  Has your doctor put you on any supplements to correct these?   Are you on any medications now?

It's been my experience doctors are not familiar with vitamin and mineral deficiencies outside of anemia.  It's also been my experience doctors would prefer complicated, expensive procedures and prescribing expensive pharmaceuticals than prescribing vitamins and a gluten free diet.  My doctor refused to test for further vitamin deficiencies after my Vitamin D level came back severely low.  He said "I can't make money prescribing vitamins!"  and stormed out of the exam room.  So, yeah, shop around.  Remember, you are hiring the doctor.  You are allowed to fire unproductive employees.  Most of us oldies here have spent an average of ten years trying to get a diagnosis.  Doctors now are becoming increasingly aware of Celiac Disease, so you should be able to find someone who is, at the least, willing to explore this possibility with you.  Some people have found naturopathic medicine practitioners more helpful.

You said "abdominal pain, chronic constipation, extreme fatigue, brain fog and after losing over 20 pounds over the last 6 months despite increasing my calorie intake."  These and  the unintentional weight loss are all symptoms of vitamin deficiencies, especially Thiamine deficiency.  

There are eight water soluble B vitamins that we need to replenish every day.  B Vitamins cannot be stored for long in the body.  The eight essential B vitamins all work interdependently, so taking just one won't fix things.  

Thiamine, Vitamin B1, can become deficient in as little as nine days.  The World Health Organization (WHO) says that a thiamine deficiency can be diagnosed if improvement is seen after taking 300 mg a day of thiamine for several days.  A field test is to see if you can rise from a squat.  If you can't rise at all or have difficulty rising, you have a thiamine deficiency.   

Taking a B Complex supplement that contains all eight B vitamins would be beneficial for you.  Raising your Vitamin D level to above 78 nmol/l will also help you feel better.  Discuss this with your caregiver.

I hope this has been helpful.  Keep us posted on your progress! 

 

[StaleyFam89]

9 minutes ago, knitty kitty said:

Welcome to the forum, @StaleyFam89! 

First, be aware that you need to stay on a gluten containing diet for blood tests which test for Celiac antibodies.  Keep eating gluten for an endoscopy which checks for Celiac damage in the small intestine.  If you quit eating gluten before all tests are done, your body will stop making the antibodies against gluten that the blood tests look for.  You will get skewed results and possibly false negatives.  Your endoscopy may not show as much damage to the small intestine caused by Celiac Disease.  

Secondly, find a doctor familiar with Celiac Disease.  Perhaps a Gastroenterologist will be more knowledgeable about Celiac Disease diagnosis.  A nutritionist might be able to tell you about Celiac savvy doctors.

Being low in Vitamin B12, Vitamin D, iron and ferritin are common presenting symptoms of Celiac Disease.  Has your doctor put you on any supplements to correct these?   Are you on any medications now?

It's been my experience doctors are not familiar with vitamin and mineral deficiencies outside of anemia.  It's also been my experience doctors would prefer complicated, expensive procedures and prescribing expensive pharmaceuticals than prescribing vitamins and a gluten free diet.  My doctor refused to test for further vitamin deficiencies after my Vitamin D level came back severely low.  He said "I can't make money prescribing vitamins!"  and stormed out of the exam room.  So, yeah, shop around.  Remember, you are hiring the doctor.  You are allowed to fire unproductive employees.  Most of us oldies here have spent an average of ten years trying to get a diagnosis.  Doctors now are becoming increasingly aware of Celiac Disease, so you should be able to find someone who is, at the least, willing to explore this possibility with you.  Some people have found naturopathic medicine practitioners more helpful.

You said "abdominal pain, chronic constipation, extreme fatigue, brain fog and after losing over 20 pounds over the last 6 months despite increasing my calorie intake."  These and  the unintentional weight loss are all symptoms of vitamin deficiencies, especially Thiamine deficiency.  

There are eight water soluble B vitamins that we need to replenish every day.  B Vitamins cannot be stored for long in the body.  The eight essential B vitamins all work interdependently, so taking just one won't fix things.  

Thiamine, Vitamin B1, can become deficient in as little as nine days.  The World Health Organization (WHO) says that a thiamine deficiency can be diagnosed if improvement is seen after taking 300 mg a day of thiamine for several days.  A field test is to see if you can rise from a squat.  If you can't rise at all or have difficulty rising, you have a thiamine deficiency.   

Taking a B Complex supplement that contains all eight B vitamins would be beneficial for you.  Raising your Vitamin D level to above 78 nmol/l will also help you feel better.  Discuss this with your caregiver.

I hope this has been helpful.  Keep us posted on your progress! 

 

Thank you so much for your input! I was on vitamin D, B complex and iron supplements for about 3 months prior to doing blood work that showed I was still deficient in those. My GP advised me to double the dose. I went on to have an infusion done to help me get my levels up and doubled as she said.  So far do not seem to be less fatigued. I am considering going to a gastroenterologist on my own without a referral to at least rule out this problem. 

[knitty kitty]

1 hour ago, StaleyFam89 said:

Thank you so much for your input! I was on vitamin D, B complex and iron supplements for about 3 months prior to doing blood work that showed I was still deficient in those. My GP advised me to double the dose. I went on to have an infusion done to help me get my levels up and doubled as she said.  So far do not seem to be less fatigued. I am considering going to a gastroenterologist on my own without a referral to at least rule out this problem. 

I found this site that might help you find a doctor or a dietician.

https://nationalceliac.org/resources/where-to-find-a-dietician/

I would suggest taking the Vitamin D and B Complex twice a day at the beginning of meals.  Taking a minimum of 300mg (100 mg with each meal) of Thiamine would be beneficial as well.  I take 500 mg a day.  Thiamine needs magnesium to work effectively, so adding a magnesium citrate or magnesium glycine supplement will help also.  

Be careful with iron supplements as some can be hard on the gastrointestinal tract.  

@Christiana knows a brand that's really gentle.  Perhaps she'll join us and let us know.  

Liver is high in iron and B vitamins and fat soluble vitamins.  

Are you consuming dairy?  Lactose intolerance in people with Celiac is common.  The tips of the villi in the small intestine get eroded and cannot produce the enzyme lactase which digests lactose, the sugar in dairy.  Bacteria in the large intestine feed on the undigested lactose sugar and produce gas which causes bloating.  To ease your symptoms (while continuing on a diet containing gluten until all testing is done), you may try going dairy free.  That helps some people get through all the testing when they have severe symptoms.

Knitty Kitty

[Scott Adams]

Welcome to the forum! It is very sad that your doctor won't take you seriously. The only way to be screened for celiac disease is if you are eating gluten daily during the 6-8 weeks leading up to the blood test, so keep that in mind. Unfortunately they can't test yet for non-celiac gluten sensitivity, which ~10x more people have than celiac disease, so even if your tests are negative it may still make sense to try the gluten-free diet.

In the long term it's always best to have a doctor that feels like they are your advocate, and not your adversary, so consider switching doctors!

[Wheatwacked]

I am sorry to hear of your surgery. Even sorrier it did not have the expected results. And then the "eye roll"!

On 2/22/2022 at 6:50 PM, StaleyFam89 said:

Does anyone else have any experience with doctors jumping to cancer before a celiac diagnosis? 

Yes.

Before you go further you need to correct any deficiencies. And here is the problem. The general belief is that vitamin and mineral deficiencies are not a problem and anyone suggesting it borders on quackery. It's not just the B vitamins there are 40+ others like choline, potassium, iodine, D. To carry the car analogy below a little farther and I think more accurately, having too much oil in the engine won't make it run better; but not enough and it breaks down fast.

A low BUN value may be caused by a diet very low in protein, by malnutrition, or by severe liver damage. It could also be the kidneys are doing too good removing it. Doctors will focus on liver and kidney, rarely malnutrition.

Here is a link to a food log. Most important is that I've compiled the minimum (100% RDA) and the upper recommended limits for reference. Not included are iodine 125 mcg to 1100 mcg and lithium 1 to 20 mg per day)    http://nutrientlog.doodlesnotes.net/

Quote

A great analogy of this phenomenon is the gas in your car. Does it drive faster with a half-tank of gas or a full one? It does not matter; the car drives just as fast as long as it has gas. Similarly, depletion of B vitamins will cause problems in energy metabolism, but having more than is required to run metabolism does not speed it up. Buyers of B-vitamin supplements beware; B vitamins are not stored in the body and all excess will be flushed down the toilet along with the extra money spent.   https://med.libretexts.org/Courses/American_Public_University/APU%3A_Basic_Foundation_of_Nutrition_for_Sports_Performance_(Byerley)/08%3A_Vitaminand_Mineral_Basics%3A_Metabolic_Regulators/8.14%3A_Vitamins_Important_for_Metabolism

 

[Wheatwacked]

My wife died of malnutrition after a hysterectomy and three rounds of chemo were unsuccessful for stage 4b ovarian cancer. No one gave us nutritional advice.

On 2/23/2022 at 2:45 PM, Scott Adams said:

even if your tests are negative it may still make sense to try the gluten-free diet.

 

[frieze]

On 2/22/2022 at 9:50 PM, StaleyFam89 said:

I am a 30 yr old female. I went to my doctor after abdominal pain, chronic constipation, extreme fatigue, brain fog and after losing over 20 pounds over the last 6 months despite increasing my calorie intake. I was sent to a gyno who diagnosed me with ovarian problems and I had a complete hysterectomy 2 months ago. After the surgery I lost 5 more pounds, putting me clinically underweight, during recovery and hit a wall as far weakness and fatigue. I went back to my GP who wanted to send me to an oncologist and sent me for a mammogram. My blood work previous and during this time screened negative for diabetes, thyroid problems or stomach bacteria. They showed deficiencies in Vitamin B, Vitamin D, iron and ferratin despite taking supplements, my BUN level was low and also my SED rate continued to elevate during this time. I was so desperate to find answers I started scouring the internet and came across celiac disease. It seems to check all the boxes for my symptoms, but when I brought it up to my GP she rolled her eyes and said she'd do the test but don't be surprised when it's negative. I am so desperate to feel better I am considering going gluten free on my own while we wait for the blood test. How can I get my doctor to take me and my symptoms seriously? Does anyone else have any experience with doctors jumping to cancer before a celiac diagnosis? 

What were the ovarian problems that would cause a doc to do a total hyst?????

Just now, frieze said:

What were the ovarian problems that would cause a doc to do a total hyst?????

On a 30 year old...

[StaleyFam89]

5 hours ago, frieze said:

What were the ovarian problems that would cause a doc to do a total hyst?????

On a 30 year old...

I have strong family history of ovarian cancer, tested positive for the BRACA mutation, had elevated Cancer antigen 125 levels (2x what is considered normal) and had a large mass on my left ovary. When he got in there I had horrible adenomyosis (my uterus was 2.5 times the size it should be), my cervix was infected, and both ovaries were covered in cysts. But everything was considered benign. I agreed to a hysterectomy because I already have 6 beautiful children with my husband and saw my mom and grandma almost die from these cancers.  It's a breathe of relief it wasn't cancer,  but now I'm back to square one with what's causing my other symptoms. 

[StaleyFam89]

15 hours ago, Wheatwacked said:

My wife died of malnutrition after a hysterectomy and three rounds of chemo were unsuccessful for stage 4b ovarian cancer. No one gave us nutritional advice.

 

I am so sorry to hear that. I almost lost my mom and grandma too the same cancer. It is horrible that nobody cares about our diet and doesn't think that what we put into it matters.  

[StaleyFam89]

On 2/22/2022 at 9:41 PM, knitty kitty said:

Welcome to the forum, @StaleyFam89! 

First, be aware that you need to stay on a gluten containing diet for blood tests which test for Celiac antibodies.  Keep eating gluten for an endoscopy which checks for Celiac damage in the small intestine.  If you quit eating gluten before all tests are done, your body will stop making the antibodies against gluten that the blood tests look for.  You will get skewed results and possibly false negatives.  Your endoscopy may not show as much damage to the small intestine caused by Celiac Disease.  

Secondly, find a doctor familiar with Celiac Disease.  Perhaps a Gastroenterologist will be more knowledgeable about Celiac Disease diagnosis.  A nutritionist might be able to tell you about Celiac savvy doctors.

Being low in Vitamin B12, Vitamin D, iron and ferritin are common presenting symptoms of Celiac Disease.  Has your doctor put you on any supplements to correct these?   Are you on any medications now?

It's been my experience doctors are not familiar with vitamin and mineral deficiencies outside of anemia.  It's also been my experience doctors would prefer complicated, expensive procedures and prescribing expensive pharmaceuticals than prescribing vitamins and a gluten free diet.  My doctor refused to test for further vitamin deficiencies after my Vitamin D level came back severely low.  He said "I can't make money prescribing vitamins!"  and stormed out of the exam room.  So, yeah, shop around.  Remember, you are hiring the doctor.  You are allowed to fire unproductive employees.  Most of us oldies here have spent an average of ten years trying to get a diagnosis.  Doctors now are becoming increasingly aware of Celiac Disease, so you should be able to find someone who is, at the least, willing to explore this possibility with you.  Some people have found naturopathic medicine practitioners more helpful.

You said "abdominal pain, chronic constipation, extreme fatigue, brain fog and after losing over 20 pounds over the last 6 months despite increasing my calorie intake."  These and  the unintentional weight loss are all symptoms of vitamin deficiencies, especially Thiamine deficiency.  

There are eight water soluble B vitamins that we need to replenish every day.  B Vitamins cannot be stored for long in the body.  The eight essential B vitamins all work interdependently, so taking just one won't fix things.  

Thiamine, Vitamin B1, can become deficient in as little as nine days.  The World Health Organization (WHO) says that a thiamine deficiency can be diagnosed if improvement is seen after taking 300 mg a day of thiamine for several days.  A field test is to see if you can rise from a squat.  If you can't rise at all or have difficulty rising, you have a thiamine deficiency.   

Taking a B Complex supplement that contains all eight B vitamins would be beneficial for you.  Raising your Vitamin D level to above 78 nmol/l will also help you feel better.  Discuss this with your caregiver.

I hope this has been helpful.  Keep us posted on your progress! 

 

I already took the celiac panel. Is there any need to do an endoscopy? I don't know if I can continue feeling this way for how knows much longer before i can schedule an appt with a gastroenterology. 

[Wheatwacked]

The only for sure way to tell if wheat, rye and barley are a problem for you is to abstain from them. You will notice improvement almost overnight. The endoscopy will make your insurance company happy. There are over 300 symptoms that have shown improvement with GFD.

Look at books by Dr Fuhrman, Dr Davis, Dr Hymen and Dr Amen. I found them helpful. They present regularly on South Florida Public Broadcasting also.

These are the things that have gotten me healthy: Thiamin 500 mg, B12 1000, B complex; B5 1000 mg; Phosphatidyl Choline 840 mg; Lithium 5 mg; vitamin C 1000 mg; Calcium 1000 mg; vitamin D3 250 mcg (10,000 IU); 15 ml Cod Liver Oil (vitamin A and omega 3); 3 sheets Organic Nori (RDA iodine), 2 oz almonds (RDA vitamin E). The DV for potassium is 4700 mg a day. There is no safe supplement for it. It is considered a Nutrient of Concern in the US, Europe and the WHO.

The most significant for me were 250 mcg vitamin D (10,000 IU), 500 Thiamine, 140 mg iodine (from the nori), and 840 mg phosphatidyl choline. The rest I identified as consistently low intake from my food log spreadsheet over two years and though it is a pain, being sick was worse.