Questions and concerns

[Makky]

Hello all, I have a lot of questions and concerns that hopefully some of you more educated, diagnosed members can answer.

I had been having horrible symptoms for about a month, starting in the end of April ‘21, ended up in the Er many times and many different doctors visits. Eventually, through my own research, I was able to match my symptoms up to Celiac (among other things, also having my thyroid checked). TTG Iga blood test level was about 66U/mL, endomysial iga was also positive, but doctor still wants a biopsy (happening in a month). I have already begun the gluten free diet because I simply cannot handle the symptoms any longer, unbearable headaches, back pain, lightheadedness, constant hunger even after eating huge amounts (possibly iron deficiency + I had very low vitamin D, didn’t yet check my other vitamin and mineral levels though). Anywho, what I am wondering, is whether or not I can continue my gluten free diet and still show up with damaged villi on the endoscopy. From my research, I have found that it takes a few months (sometimes years?) for villi to heal. I have an appointment with my doctor to discuss further in about a week, but at this point she is definitely becoming frustrated with me, which is why I am reaching out here to get other opinions from celiac patients who have gone through this. Should I continue to poison myself all through the next month, or stay off the gluten and risk a negative biopsy? I will also be requesting the blood HLA test, a lot of questions there, and I know this forum is a bit “old”, but hopefully someone can bring some clarity or advice, thank you so much.🥺🙏

[trents]

Welcome to the forum Makky!

How long have you been on a gluten-free diet? Do you have a date scheduled yet for the endoscopy/biopsy?

Have you experienced significant improvement in your symptoms since going gluten-free?

Is there a particular reason you need to have an official dx of celiac disease or gluten sensitivity? The biopsy would distinguish between the two as with gluten sensitivity many of the symptoms and long term health risks are the same but there is no blunting of the villi? 

Finally, if you feel your doctor is not listening to you and respecting your desire to take control of your health issues, I would look for another doctor.

Oh yes, do you have the reference values for the labs you shared in your first post. Raw numbers don't mean a lot unless you have the reference values to indicate what is the normal range. Different labs use different reference values.

[Makky]

2 minutes ago, trents said:

Welcome to the forum Makky!

How long have you been on a gluten-free diet? Do you have a date scheduled yet for the endoscopy/biopsy?

Have you experienced significant improvement in your symptoms since going gluten-free?

Is there a particular reason you need to have an official dx of celiac disease or gluten sensitivity? The biopsy would distinguish between the two as with gluten sensitivity many of the symptoms and long term health risks are the same but there is no blunting of the villi? 

Finally, if you feel your doctor is not listening to you and respecting your desire to take control of your health issues, I would look for another doctor.

Oh yes, do you have the reference values for the labs you shared in your first post. Raw numbers don't mean a lot unless you have the reference values to indicate what is the normal range. Different labs use different reference values.

Hello Trents, thank you so much for the reply, yes my scheduled date for the endoscopy is July 1st, but I am on a list in case anyone cancels to come in sooner. Yes, I definitely have already seen improvement since going gluten free, for the last week now, with my aches and pains, fatigue, and brain fog significantly. Still having a lot of issues with my heart, I am 23 by the way, and before this a very healthy person, this absolutely hit me out of nowhere. I used to walk 3-5 miles a day, now I can barely do household chores without being out of breath. I am only going through with the biopsy due to my doctor ordering it, and for some peace of mind. 

My exact labs are as follows: IgA standard range: "70-400 mg/dl", my range: 139 mg/dl (seemingly normal, which leads to believe it is celiac and not just an allergy?)

Ttg iga standard range: "<=3.99 U/ml", my range: 66.84 U/ml 

Endomysial iga standard range: "negative", my range: "positive"

Endomysial iga titer standard range: "<1:10", my range: 1:80

Hopefully I put that all down clearly enough, and once again thank you so much for the help.

[trents]

IGA is not used to detect allergies. IGE is used for allergies. 

What's going on with your heart? That is not a common issue with either celiac disease or NCGS. Is the heart issue related to a vitamin or mineral deficiency? Sounds like you need to get a thorough analysis of vitamin and mineral levels. But realize there are limitations to that since they can only measure serum levels rather than what is actually getting to the cells of your body tissues. Sometimes symptoms are a better indicator of vitamin and mineral deficiencies. You might consider consulting with a naturopathic physician for that part.

The standard guideline in the USA is to be consuming an amount of gluten equivalent of two slices of wheat bread daily for at least two weeks before a small bowel biopsy. As is, you will have been off gluten for about 5 weeks before your scheduled biopsy. Certainly not long enough for complete healing but long enough to perhaps make the test either invalid or equivocal. A lot would depend on how deep and serious the damage already is.

[Makky]

2 minutes ago, trents said:

IGA is not used to detect allergies. IGE is used for allergies. 

What's going on with your heart? That is not a common issue with either celiac disease or NCGS. Is the heart issue related to a vitamin or mineral deficiency? Sounds like you need to get a thorough analysis of vitamin and mineral levels. But realize there are limitations to that since they can only measure serum levels rather than what is actually getting to the cells of your body tissues. Sometimes symptoms are a better indicator of vitamin and mineral deficiencies. You might consider consulting with a naturopathic physician for that part.

The standard guideline in the USA is to be consuming an amount of gluten equivalent of two slices of wheat bread daily for at least two weeks before a small bowel biopsy. As is, you will have been off gluten for about 5 weeks before your scheduled biopsy. Certainly not long enough for complete healing but long enough to perhaps make the test either invalid or equivocal. A lot would depend on how deep and serious the damage already is.

Thank you, I have quite a few blood tests to request now, including the IGE, I am not sure what is going on with my heart unfortunately, it just seems to be much more rapid than before, as well as an increase in blood pressure, I have had a hemoglobin A1C test done as well as checked my cholesterol, so probably not diabetes, but my suspicions are possibly a thyroid issue or the iron deficiency due to not getting proper nutrients, will be having a thyroid uptake on the 15th to rule that out, and will be requesting a serum iron test as well. Yes, that is what I feared, that I may have to go back on the gluten for the biopsy to be conclusive, I am hesitant due to fear of lasting damage, and the brain fog and headaches as I am starting summer classes on the 7th of June. Definitely stuck in a hard place right now, which is why I reached out here, I really appreciate your wisdom and will just have to power through. Easier said than done, especially as a young woman who is eager to get back to life pre-covid after being cooped up a year. Wish this would’ve happened to me at the beginning of the pandemic instead of now, so I could have it sorted by now, but nothing I can do to change that. Once again, thank you so much Trents.

[trents]

Are you currently taking any vitamin and mineral supplements?

You should get not only you hemoglobin levels checked but your ferritin levels checked.

[trents]

Is the physician currently managing your care a GP or a GI doctor? Please keep in mind that the medical community as a whole is woefully ignorant of celiac disease/gluten sensitivity. Most of us have reached the conclusion we have to do the research, come armed with information and take them by the hand to get done what we need done, i.e take control and be appropriately assertive. I also realize this wouldn't be easy for a young person.

[Makky]

2 minutes ago, trents said:

Are you currently taking any vitamin and mineral supplements?

You should get not only you hemoglobin levels checked but your ferritin levels checked.

Currently I take daily: 

5000 iu of vitamin d3, (I had low vitamin D, but will go back down to 2000 iu after a month of the surplus), a daily B-complex, 30 mg zinc, and 500-1000 mg C, I was looking into the slow-fe iron tablets but am trying not to self prescribe too much.

1 minute ago, trents said:

Is the physician currently managing your care a GP or a GI doctor? Please keep in mind that the medical community as a whole is woefully ignorant of celiac disease/gluten sensitivity. Most of us have reached the conclusion we have to do the research, come armed with information and take them by the hand to get done what we need done, i.e take control and be appropriately assertive. I also realize this wouldn't be easy for a young person.

Currently I am dealing with my primary physician, and the biopsy will be done by the Gastro, hopefully I can make an appointment with them as well to discuss further, but my doctor has been trying to push it all off as anxiety/stress of course, which led me to doing all this research and request the ttg test after a month of getting worse and worse with no avail. 

[trents]

The B-vitamins are all water soluble so don't worry about overdosing on those. What your body doesn't use is peed out. You might want to consider taking extra B12 and adding magnesium. But don't go overboard on the magnesium and choose a formulation that is very assimilable in order to prevent the laxative effect magnesium can have.

[Makky]

4 minutes ago, trents said:

The B-vitamins are all water soluble so don't worry about overdosing on those. What your body doesn't use is peed out. You might want to consider taking extra B12 and adding magnesium. But don't go overboard on the magnesium and choose a formulation that is very assimilable in order to prevent the laxative effect magnesium can have.

Thank you so much, I will definitely work on adjusting my supplements because I agree it may help with some of my symptoms.

[GF-Cate]

13 hours ago, Makky said:

My exact labs are as follows: IgA standard range: "70-400 mg/dl", my range: 139 mg/dl (seemingly normal, which leads to believe it is celiac and not just an allergy?)

Ttg iga standard range: "<=3.99 U/ml", my range: 66.84 U/ml 

Endomysial iga standard range: "negative", my range: "positive"

Endomysial iga titer standard range: "<1:10", my range: 1:80

Hi Makky,

The first test you listed - IgA - is not a celiac diagnostic test. It is run to verify that you are not IgA deficient (you're not, you are in range). For people who are IgA deficient, they use different celiac diagnostic tests, but they have to first know if you are IgA deficient or not, which is why they run this test as part of the panel.

tTG-IgA: Your result of 66.84 is strongly positive 

(different labs have different reference ranges, but generally >10.0 U/mL is strongly positive)

"For individuals with moderately to strongly positive results, a diagnosis of celiac disease is likely and the patient should undergo biopsy to confirm the diagnosis."

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/82587

EMA-IgA: your result is positive

"The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test."

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The biopsy is considered the "gold standard" for official celiac diagnosis. Since you have already begun a gluten-free diet, your biopsy results may not be accurate (there also may still be enough villi damage to diagnose celiac - it just depends on how much damage there was and how quickly you heal - I know that's not a very helpful answer). 

Does your GI team understand how sick gluten seems to be making you? Perhaps they can prioritize your endoscopy/biopsy if you plead your case to them (I know that can be a long shot, but worth a try calling the GI office directly).

"A gluten challenge should only be supervised by a physician trained in celiac disease, who can move you immediately to a biopsy if your symptoms are severe."

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The HLA testing (gene testing) can be done at any time -- whether you are consuming gluten or not. Unlike the other celiac testing, the gene testing does not require you to be currently consuming gluten for accuracy (though they should really start with this test if celiac is suspected IMO).

I hope that helps some!

[Makky]

11 minutes ago, GF_Cate said:

Hi Makky,

The first test you listed - IgA - is not a celiac diagnostic test. It is run to verify that you are not IgA deficient (you're not, you are in range). For people who are IgA deficient, they use different celiac diagnostic tests, but they have to first know if you are IgA deficient or not, which is why they run this test as part of the panel.

tTG-IgA: Your result of 66.84 is strongly positive 

(different labs have different reference ranges, but generally >10.0 U/mL is strongly positive)

"For individuals with moderately to strongly positive results, a diagnosis of celiac disease is likely and the patient should undergo biopsy to confirm the diagnosis."

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/82587

EMA-IgA: your result is positive

"The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test."

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The biopsy is considered the "gold standard" for official celiac diagnosis. Since you have already begun a gluten-free diet, your biopsy results may not be accurate (there also may still be enough villi damage to diagnose celiac - it just depends on how much damage there was and how quickly you heal - I know that's not a very helpful answer). 

Does your GI team understand how sick gluten seems to be making you? Perhaps they can prioritize your endoscopy/biopsy if you plead your case to them (I know that can be a long shot, but worth a try calling the GI office directly).

"A gluten challenge should only be supervised by a physician trained in celiac disease, who can move you immediately to a biopsy if your symptoms are severe."

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The HLA testing (gene testing) can be done at any time -- whether you are consuming gluten or not. Unlike the other celiac testing, the gene testing does not require you to be currently consuming gluten for accuracy (though they should really start with this test if celiac is suspected IMO).

I hope that helps some!

Thank you so much for the expertise, Cate, I truly appreciate it, and that is what I feared, I think I will continue the gluten free diet for one more week to see how my symptoms clear up, (they already seem to be a bit better), and then go back on the gluten for the next three weeks before the biopsy. I will also be calling the GI office again on Tuesday to see if there are any cancellations in order to get in sooner. This whole process is absolutely horrible, I just want to focus on healing but this is teaching me to have more patience. I have so much anxiety about the fact that I live with my gluten-consuming family (and a mother who loves to bake), I know things will get better with time, it’s just so tough to have your life completely derailed in such a way. I appreciate this forum being here so that I have somewhere to write my thoughts and feelings down, and once again, thank you so much. 🙏

[Scott Adams]

I don't think it would make any sense to get the endoscopy 4 weeks from now if you've already been gluten-free for a while. If you can't push it up sooner than you may want to cancel it, but it could still provide useful information on the condition of your gut, if you are concerned about that. Getting it sooner would be a better option, and you're already working on this. Clearly the fact that you can't keep eating gluten without terrible symptoms, and those symptoms have go away on a gluten-free diet, along with your blood test results, tell me that you already have your answer, but let us know how things turn out.

[Makky]

2 minutes ago, Scott Adams said:

I don't think it would make any sense to get the endoscopy 4 weeks from now if you've already been gluten-free for a while. If you can't push it up sooner than you may want to cancel it, but it could still provide useful information on the condition of your gut, if you are concerned about that. Getting it sooner would be a better option, and you're already working on this. Clearly the fact that you can't keep eating gluten without terrible symptoms, and those symptoms have go away on a gluten-free diet, along with your blood test results, tell me that you already have your answer, but let us know how things turn out.

Thank you Scott, I will definitely follow up here as things progress, I have only been gluten free about a week now, but may start having a piece of toast each morning for the next month until the biopsy just so I can get the clear results, as difficult as it may be. I appreciate all the insight.

[Jaffy]

As to how sensitive "we" can be to gluten, I just have to share this: my husband loves pancakes and has made is own for several years before I discovered that gluten affected me.  We are both 75 and hubby's essential tremors are really worsening, so two months ago, he asked me if I would flip his pancakes over.       Sure!  Within less than 10 minutes I was attacked and sitting in the bathroom!          Now the toothpaste the dentist suggested for my gums (and is powerfully, wonderful) must have built up in my system and severe nausea and vomiting!  It took about a month to come to this!  I have had Parkinson's disease for 30 years and have never taken meds for it because of my sensitivity to medicines. I am doing very well, thank God, but I have found this "gluten terror" to be worse than the PD!

 

 

[trents]

1 hour ago, Jaffy said:

As to how sensitive "we" can be to gluten, I just have to share this: my husband loves pancakes and has made is own for several years before I discovered that gluten affected me.  We are both 75 and hubby's essential tremors are really worsening, so two months ago, he asked me if I would flip his pancakes over.       Sure!  Within less than 10 minutes I was attacked and sitting in the bathroom!          

 

 

So what do you feel was the mechanism of glutening in this situation? Breathing the fumes? Transdermal from contact with any batter that might have been on the spatula handle? Could it have been coincidence?

[Jaffy]

Trents, I have racked my mind and it could have been all of the above, except not a coincidence! I have repented many times for the chuckles I had over the sensitivity I read on here - BEFORE - I experienced them myself!  I thought they were basket cases and now I find that I am in the basket with them.  As sensitive as I am to meds I should have known this would by my life!  When a doctor gave me a medicine for serotonin and said it would take 2 weeks to notice a change - HA! - in 2 hours I couldn't talk or walk I was so limber and stuttering!   Last week hubby made pancakes and I stayed in the bedroom for about an hour afterward, when I came in I went straight out the door, I was having trouble breathing with the "flour" in the air.  The worse the essential tremors get the more the 'flour flies'.  It wasn't long until I had gut pain. Don't know what I am to do!

[trents]

I think your hubby should consider going gluten free for your sake at least. It is very difficult to avoid being glutened when others in the household are still using wheat products. Has he been tested for celiac disease? I mean essential tremors are a neurological phenomenon of, according to the medical community, unknown cause. And you both have tremors, albeit of a different nature. Neurological problems are a well-known offshoot of celiac disease/gluten sensitivity.

[sandbtmytoes]

On 5/28/2021 at 10:11 PM, Makky said:

Currently I take daily: 

5000 iu of vitamin d3, (I had low vitamin D, but will go back down to 2000 iu after a month of the surplus), a daily B-complex, 30 mg zinc, and 500-1000 mg C, I was looking into the slow-fe iron tablets but am trying not to self prescribe too much.

Currently I am dealing with my primary physician, and the biopsy will be done by the Gastro, hopefully I can make an appointment with them as well to discuss further, but my doctor has been trying to push it all off as anxiety/stress of course, which led me to doing all this research and request the ttg test after a month of getting worse and worse with no avail. 

You mentioned slow fe and getting out of breath. Slow fe helped me a lot and if you are anemic, it can definitely affect the heart, usually in the severe stages. This is my story with slow fe and later celiac from another post:

  Almost four years before finding out I had celiac, I was diagnosed with iron deficiency anemia by the gynecologist. This should have been a clue, as anemia is a symptom of celiac, but since it was the gyno and they see anemia due to heavy bleeding, it wasn’t investigated. This was found in a CBC, not hemoglobin. I thought I had fibromyalgia or was going crazy, because I could hardly go from the bed to the couch and I never felt rested no matter how much sleep I got. I felt tired in my sleep- sounds funny, but those that have been that tired know what I mean. I had headaches every day, my hands and feet would tingle if I tried to exercise, my skin on my thighs and upper arms was sore to the touch, and I was an emotional wreck. Turns out, I had enough red blood cells but they were too small, not mature (dying too fast). Microcytic anemia. He told me to take Slow Fe otc iron supplement. Changed my life. After three weeks I felt better than I had in years. I was able to start exercising and lost 18 pounds in 9 months, 4 lbs. more than my goal.  Then, two years later I was hit with a terrible stomach virus that lingered eight weeks and the IBS I thought I had that had come and gone over the last ten years was back with a vengeance. But this time, it didn’t go away and got worse and worse until it was daily. Went to my pcp thinking I would get treated for IBS. She gave me IBS meds (which made me violently ill) and tested for several autoimmune diseases. That’s where the celiac showed up. I stopped eating gluten and could tell a world of difference on the first day. 

[Jaffy]

21 hours ago, trents said:

I think your hubby should consider going gluten free for your sake at least. It is very difficult to avoid being glutened when others in the household are still using wheat products. Has he been tested for celiac disease? I mean essential tremors are a neurological phenomenon of, according to the medical community, unknown cause. And you both have tremors, albeit of a different nature. Neurological problems are a well-known offshoot of celiac disease/gluten sensitivity.

Thank you, I would never have thought of that! After 53 years together and he's had the ET's since his 30's, it is just common, everyday living.

[Makky]

On 5/30/2021 at 6:53 AM, Jaffy said:

As to how sensitive "we" can be to gluten, I just have to share this: my husband loves pancakes and has made is own for several years before I discovered that gluten affected me.  We are both 75 and hubby's essential tremors are really worsening, so two months ago, he asked me if I would flip his pancakes over.       Sure!  Within less than 10 minutes I was attacked and sitting in the bathroom!          Now the toothpaste the dentist suggested for my gums (and is powerfully, wonderful) must have built up in my system and severe nausea and vomiting!  It took about a month to come to this!  I have had Parkinson's disease for 30 years and have never taken meds for it because of my sensitivity to medicines. I am doing very well, thank God, but I have found this "gluten terror" to be worse than the PD!

 

 

Hello Jaffy, thanks for the reply and sorry for the late reply on my end. I appreciate all the information and wish you the best on your journey, it's very interesting to see the different ranges of sensitivity and symptoms between all of us!

[Makky]

Hello all, thanks again for all the info that you shared, quick update for those who asked:

I am now coming up on six weeks gluten-free, with one accidental slip up the other day. I am adjusting to the gluten-free diet the best I can while also trying my best to eat as healthy as possible. I have yet to decide whether or not I need to quit dairy, soy, sugar, nightshades among other things that I have seen many people mention in the forum. I am definitely far from being back to my old self, but with the covid numbers dropping sharply where I live, and the need for $$, I have recently decided to go back to work next week. I did have my thyroid looked into because my celiac symptoms so greatly matched those of Graves disease. Upon routine blood tests, all my levels are totally within range, and antibody's negative, although I did a thyroid uptake and scan which came back as being Graves, so not exactly sure where to go on that. Maybe it was just my immune system reacting in a crazy way to the gluten that it messed with my thyroid temporarily? I had never had those tests before the last few months so, sadly nothing to compare them to now but I do plan to ask them to be checked routinely to make sure that all parts of my system are healing properly as I continue the gluten-free lifestyle. I was so stressed thinking about the fact that I may have to get on thyroid medication and the diagnosis of two lifelong conditions in the same month. I am waiting to hear back from the doctor to get their thoughts on the whole thing. My lingering symptoms include, fatigue, some trouble sleeping (currently on trazodone but would love to drop the pills soon), horrible muscle pain, excessive hunger accompanied by headaches if I don't intake enough calories for the day, frequent urination, and anxiety/depression (which I refuse to take pills for), and it also seems like my heart beats very hard which causes shortness of breath, I was working out a lot before all this happened so trying to get back to where I was slowly. I know some of those sound like diabetic symptoms but I have had a full panel done in that regard, I am praying it's all still just my body working on healing, trying to regain the nutrients I am lacking, and working out all the horrible stress I have been under the last two months due to all of this. Hope everyone else is doing well :)

Forgot to mention I did end up foregoing the endoscopy, I feel my blood tests are enough because of the nature of them being highly positive and I don't wish to put any more stress on my body and mind.

[trents]

Thyroid hormone levels, like blood pressure readings, are very variable and it can be difficult to pin down by one blood test done at a point in time. Symptoms may be a better indicator.

[Makky]

13 minutes ago, trents said:

Thyroid hormone levels, like blood pressure readings, are very variable and it can be difficult to pin down by one blood test done at a point in time. Symptoms may be a better indicator.

I completely agree, yet of course the doctors want to see the ridiculously low/high levels before they decide to treat. My TSH is finally over 1.0 for the first time in years (compared to 2018-up until recent celiac diagnosis it was between .2 and .3), after being on the gluten-free diet for the last month and a half. So now, I have the option to wait and see if it continues to improve with the diet, and have these blood draws again for the next few months or treat the subclinical hyperthyroidism with a very small dosage of methimazole... So stressful and not exactly sure what my best option will be here.

[trents]

Hi, Sharon, and welcome to the forum.

It would be more proper forum etiquette if you were to start your own thread and ask this question. We would be glad to help you but we don't want to derail the thread started by Makky.