Pre-Diagnosis, a few questions

[JOZ]

Hi guys! I just joined the group. As you can tell from the title, I haven't been diagnosed yet, but I have been experiencing symptoms for over a year now. Now, after lots of research and a recent increase in symptoms I am thinking that I might have a gluten intolerance or Celiac. Last year, I gained 20 pounds in about two months. This was very surprising to me, as I exercise about 6 days a week, and I hadn't changed my diet. I wear a Garmin, so I track my calories in/out, and I generally (when dieting, as I was because I wanted to lose the 20 pounds I gained) ate around 1300-1800 calories a day while consistently burning about 2200 calories (I am aware 1300 calories is low, but I'm recovering from an eating disorder that was triggered by the weight gain, so I'm working on it.) Despite all this, the weight just wouldn't come off. In November of last year, I fractured the femoral neck from running, a thing my doctor said is very unusual for a person my age (at the time I was 22), I have also seemed to have been plagued by breaking limbs every few years since my childhood. I also began to experience what I now think is bloating. I have also ever since I was a baby had severe constipation.  Recently, I have had more mucus in my stool then I have ever seen before. On top of that, I have always have had a very hard tome falling and staying asleep. As I was researching Celiac, I realized that many of my symptoms matched with the intolerance. I am scheduled for an appointment with a gastroenterologist next week, but I am hoping to get some ideas for questions I should be asking, tests I should ask about getting, really anything you wish you had asked when first getting diagnosed. I also wanted to hear about your pre-diagnosis stories, especially concerning weight gain pre diagnosis, and if it came off once you started cutting out gluten.

 

Thanks so so so much for taking the time to read my story!

 

--A newbie to the Celiac community

[trents]

Welcome to the forum, Joz!

First, don't cut back on gluten before all testing is complete or you may sabotage the results.

Second, the effect of celiac disease on weight can cut either way. Most celiacs seem to have trouble keeping weight on prior to diagnosis and going gluten free. Of course, this is due to the malabsorption caused by damage to the villi of the small bowel. A certain percentage of undiagnosed celiacs gain weight, however. I'm guessing it's because they eat more, the body trying to compensate for the malabsorption going on.

In your case, however, the latter doesn't apply since you know that you have reduced your calorie intake and are burning calories from exercise. My concern in your case would be that the weight gain is mostly fluid buildup for some reason probably not related to celiac disease. 

Have you had a thorough general medical workup with CBC (complete blood count) and CMP (Complete Metabolic Panel)? In view of the fractures, have you had a Dexa Scan (bone density scan)? May we ask if you are male or female?

It is likely the GI doc will want to do some blood antibody testing for celiac disease to start with. Hopefully he/she will order a full celiac panel and not just the tTG-IGA test. I would be asking for total serum IGA, tTG-IGA (the centerpiece) and the deamidated gliadin peptide (DGP IgA and IgG) tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There is also an EMA test but it is not very sensitive, even though it is very specific for celiac disease. It is also a relatively expensive test.

[JOZ]

15 minutes ago, trents said:

Welcome to the forum, Joz!

First, don't cut back on gluten before all testing is complete or you may sabotage the results.

Second, the effect of celiac disease on weight can cut either way. Most celiacs seem to have trouble keeping weight on prior to diagnosis and going gluten free. Of course, this is due to the malabsorption caused by damage to the villi of the small bowel. A certain percentage of undiagnosed celiacs gain weight, however. I'm guessing it's because they eat more, the body trying to compensate for the malabsorption going on.

In your case, however, the latter doesn't apply since you know that you have reduced your calorie intake and are burning calories from exercise. My concern in your case would be that the weight gain is mostly fluid buildup for some reason probably not related to celiac disease. 

Have you had a thorough general medical workup with CBC (complete blood count) and CMP (Complete Metabolic Panel)? In view of the fractures, have you had a Dexa Scan (bone density scan)? May we ask if you are male or female?

It is likely the GI doc will want to do some blood antibody testing for celiac disease to start with. Hopefully he/she will order a full celiac panel and not just the tTG-IGA test. I would be asking for total serum IGA, tTG-IGA (the centerpiece) and the deamidated gliadin peptide (DGP IgA and IgG) tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There is also an EMA test but it is not very sensitive, even though it is very specific for celiac disease. It is also a relatively expensive test.

 

[JOZ]

Just now, JOZ said:

 

Hi Trent! I am female, and I did recently have a blood test, Whole blood count came back low, but it looks like they didn't test teh two you mentioned. I had an MRI when I hurt myself last November, and my Orthopedic Doctor said my bones don't show signs of osteoporosis, but it does run in my family, but I couldnt find a mention of DEXA Scan in my charts

18 minutes ago, trents said:

Welcome to the forum, Joz!

First, don't cut back on gluten before all testing is complete or you may sabotage the results.

Second, the effect of celiac disease on weight can cut either way. Most celiacs seem to have trouble keeping weight on prior to diagnosis and going gluten free. Of course, this is due to the malabsorption caused by damage to the villi of the small bowel. A certain percentage of undiagnosed celiacs gain weight, however. I'm guessing it's because they eat more, the body trying to compensate for the malabsorption going on.

In your case, however, the latter doesn't apply since you know that you have reduced your calorie intake and are burning calories from exercise. My concern in your case would be that the weight gain is mostly fluid buildup for some reason probably not related to celiac disease. 

Have you had a thorough general medical workup with CBC (complete blood count) and CMP (Complete Metabolic Panel)? In view of the fractures, have you had a Dexa Scan (bone density scan)? May we ask if you are male or female?

It is likely the GI doc will want to do some blood antibody testing for celiac disease to start with. Hopefully he/she will order a full celiac panel and not just the tTG-IGA test. I would be asking for total serum IGA, tTG-IGA (the centerpiece) and the deamidated gliadin peptide (DGP IgA and IgG) tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There is also an EMA test but it is not very sensitive, even though it is very specific for celiac disease. It is also a relatively expensive test.

Hi Trent! I am female, and I did recently have a blood test, Whole blood count came back low, but it looks like they didn't test teh two you mentioned. I had an MRI when I hurt myself last November, and my Orthopedic Doctor said my bones don't show signs of osteoporosis, but it does run in my family, but I couldnt find a mention of DEXA Scan in my charts

[trents]

Not sure what you are referring to by "the two you mentioned".

CBC is probably the same as "whole blood count". It would look for things having to so with blood cells such as red blood cell counts/shape/size (anemia related things), platelets and white blood cells (infection fighters). CMP would be to check for things like liver and kidney functions, blood calcium levels, and serum protein status, blood sugar levels. 

The celiac serum antibody tests would not be included in either a CBC or CMP. The celiac antibody tests are specialized tests that must be ordered apart from either CBC or CMP. 

Edited June 23, 2022 by trents

[Wheatwacked]

2 hours ago, JOZ said:

I have also seemed to have been plagued by breaking limbs every few years since my childhood.

It is likely you have had malnutrion from unrecognized Celiac Disease most of your life, not uncommon with celiac disease. Of the more than 200 symptoms associated with Celiac Disease I counted 19 that improved for me just from GFD and vitamin replenishment.

This is the perfect time to get the full panel of Celiac tests and vitamins from your primary provider. That way the GI doc will know your antibody level before scheduling an endoscopy. Otherwise your first visit will be: Hello, I am going to stick a tube in you next week. With the antibody results in hand he will be less blind and less likely to blow you off. It is not just in your head. It is not stress.

Your primary can also test for vitamin deficiencies. Your vitamin D is almost guaranteed low, by your location, and bone breakage, Bones also need potassium, phosphorus, calcium, vitamin C, vitamin K, magnesium and more. Get tested for D, homocysteine, folate, B12 and B6.and B!  B1 Thiamine can pass the minimum but still be functionally deficient. 

Healthcare Providers Who Treat Celiac Disease or Gluten Sensitivity who does what?

"Unquestionably, potassium is one of the most important key bone nutrients, and consuming the recommended amount of 4,700 mg potassium a day should be a top priority for everyone. " Potassium, the hidden bone guardian  By the way, potassium deficiency is considered a nutrient of interest by the World Health Organization, the US, Europe and a lot more countries. I found that when I ate 5 grams of potassium a day most of the other vitamins were above minimum RDA.

This chart may help bring it into focus.

 

 

 

Edited June 23, 2022 by Wheatwacked
typos

[JOZ]

27 minutes ago, Wheatwacked said:

It is likely you have had malnutrion from unrecognized Celiac Disease most of your life, not uncommon with celiac disease. Of the more than 200 symptoms associated with Celiac Disease I counted 19 that improved for me just from GFD and vitamin replenishment.

Hi Wheatwacked! I really appreciate your perspective, especially you telling me its not all in my head. I have struggled with these issues for years, especially the constipation, and no one has taken me seriously. I will definitely be bring your notes to my appointment next week ❤️

 

 

[Wheatwacked]

I like cherry flavored magnesium citrate. 1 or 2 ounces in a glass of water tastes like lemonade to me. makes orange juice instead of water taste interesting. 10 ounce bottle about >$2. Each ounce has 390 mg of magnesium. The RDA is 310 (female, 18-30) . As a laxative the dose is 6.5 to 10 ounces. Start low, work your way up over a few days.

What to Know About Magnesium and Your Leg Cramps

[Awol cast iron stomach]

4 hours ago, JOZ said:

Hi guys! I just joined the group. As you can tell from the title, I haven't been diagnosed yet, but I have been experiencing symptoms for over a year now. Now, after lots of research and a recent increase in symptoms I am thinking that I might have a gluten intolerance or Celiac. Last year, I gained 20 pounds in about two months. This was very surprising to me, as I exercise about 6 days a week, and I hadn't changed my diet. I wear a Garmin, so I track my calories in/out, and I generally (when dieting, as I was because I wanted to lose the 20 pounds I gained) ate around 1300-1800 calories a day while consistently burning about 2200 calories (I am aware 1300 calories is low, but I'm recovering from an eating disorder that was triggered by the weight gain, so I'm working on it.) Despite all this, the weight just wouldn't come off. In November of last year, I fractured the femoral neck from running, a thing my doctor said is very unusual for a person my age (at the time I was 22), I have also seemed to have been plagued by breaking limbs every few years since my childhood. I also began to experience what I now think is bloating. I have also ever since I was a baby had severe constipation.  Recently, I have had more mucus in my stool then I have ever seen before. On top of that, I have always have had a very hard tome falling and staying asleep. As I was researching Celiac, I realized that many of my symptoms matched with the intolerance. I am scheduled for an appointment with a gastroenterologist next week, but I am hoping to get some ideas for questions I should be asking, tests I should ask about getting, really anything you wish you had asked when first getting diagnosed. I also wanted to hear about your pre-diagnosis stories, especially concerning weight gain pre diagnosis, and if it came off once you started cutting out gluten.

"Last year, I gained 20 pounds in about two months. "

Hello & welcome.

 I read wheatwacked and trents gave you excellent advice already. I just wanted to let you know I am NCGS, and experienced edema/bloating distension that had me appear to have gained weight during my undiagnosed time. 

So I am glad to read you are on your path to potential diagnosis whether celiac or NCGS I wish you the best in your path to diagnosis, and healing. 

 

4 hours ago, JOZ said:

Thanks so so so much for taking the time to read my story!

 

--A newbie to the Celiac community