Super confused

[pikauchu]

Hi there. Didn’t know what else to really do as talking to my husband I just get the response “I’m not a doctor”, and well I’m feeling frustrated. I had blood tests done for celiacs disease and it wasn’t actually my idea. It was my doctors idea to test for celiacs as well as a b7nch of other things, when the initial appointment was suspected gallbladder issues. I had a hda scan and ultrasound for pain near my gallbladder that moved into my back. I had an attack one night that led me into the ER and they thought it was a heart attack and didn’t even suspect the organ where I was having pain. I was completely surprised when I tested positive for celiacs. 
a weak positive on one of the tests but as far s I’m aware that doesn’t matter how weak, it’s positive. So my test results for that is IGA- 294 (normal between 87 and 352), gliadin peptide iga 6( normal 0-19), gliadin peptide igg 25 positive ( normal 0 to 19- weak positive 20 to 30) and my Tt igg was 5 (normal 0-5) was borderline and tag iga 2 where positive was 4.  So only the one test. I check my notes and I ask the doctor on the health app, does this mean I have celiacs disease? I found out my brother and my niece had it but I never knew as we don’t talk but I called them and they said you too? So yeah my brother has had it for years and been gluten free. My sister is dealing with a diagnosis for her daughter right now.  So because of family history he agreed to do an edg but in the notes says ‘I have a low suspicion’. It makes it hard because I get sick after eating, from being nauseous to terrible pain in my abdomen before extreme diarrhea. I have mostly loose yellow stools, that tend to float.. or at least don’t look normal to me. I used to get severely contipated when I was younger to the point where I couldn’t go to the bathroom for one to two weeks, it was awful. I had surgery to fix my anus I guess because of that fiasco. So I figured going to the bathroom a lot was normal. But sometimes I can go or do go 3 to 4 times a day and mostly right after eating. Where I’m like okay I guess my stomach didn’t like that…. But I’ve always had a complicated medical history with honestly no real diagnosis. I had this rash on my face so bad when I was giving birth to my son that the doctors said was impetigo but no one ever biopsy that and I don’t think it ever went away. It’s not as bad but I guess I was like, is this acne? Then I was told I had a low loss of function in my hands but they never found out why, my hands go numb sometimes. My fingers and feet and I get some tingling like they are alseep. I currently am on hydrocodone for low back chronic pain but no mri, just scans that showed bone spurs. I get rfa twice a year for the pain. Pain that’s in a lot of joins but mostly on the back. No answers there. And sometimes nerve pain shooting through my legs and lower back. And don’t get me started on the headaches. I had hypothermia thyroid younger and then had Graves’ disease… so both thyroid things although after giving birth it is barely checked by these new doctors when I moved to another state. Last check it was normal. 
 

im at a loss. I had the EDG today and I’m waiting on biopsy and my dr goes well it all looks normal. He didn’t even talk to me. He came and told my husband while I was asleep. And I dunno if it’s his personality but he always feels so unbothered. I’ve only seen him twice. I had one five to 10 min in room conversation with him and then it was all done by that stupid app. I’m worried the biopsy will come back fine and he will just be like nope. All done. My husband says I need to maybe find another doctor… I feel like I’m being treated but no one cares. 
but I saw my pcp doctors a few days ago for the rash cause i was like this can’t be acne and she even asked me, did you stop eating gluten and this looks like dermatitis herpeformitis and she so far is the only one who seems concerned and sent me off for dermatologist but.. she’s like an APRN or something like that. I’m so confused.

[Wheatwacked]

Hello pikauchu. Welcome to the forum.

The good news first. If you get a properly done biopsy for DH that is positive it is the Celiac antigens in the skin.  Do not pass go, you have Celiac Disease.  Second, with brother and sister already and a niece on the way to Celiac Disease diagnosis 40% of first degree relatives of a person with celiac disease, also have celiac disease. 

Plus ALL of your symptoms are classic symptoms of Celiac Disease.  Multiple vitamine deficiencies due to malabsorption.  Gall bladder and numbness could be low choline (liver, eggs,beef), Any brain fog. The tingling and hand problems could be choline or Thiamin B1 and any number of other vitamins. Magnesium, potassium, D. See this article on Vitamins and Celiac.

What are the chances that all of your symptoms are each an individual disease, and a strong family history. 

1 hour ago, pikauchu said:

mostly loose yellow stools, that tend to float.. or at least don’t look normal

Do you NEED an official diagnosis to validate eating gluten free?  Because in the end all you need is to not eat wheat, barley, rye or anything else that may bother you and get your vitamin intake abone the minimum. This doctor is a jerk.  With him you will go through tests looking for other explanations.  For some it can take 10 years, many unneeded invasive procedures and in the end you still are sick.

Stuff to read while sitting on the toilet:

Gall Bladder, A Vital Organ That is Being Removed At Alarming Rates

How Celiac Disease May Affect Your Risk for Gallbladder Disease

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency

Possible Role of Vitamin D in Celiac Disease Onset

Products allowed/disallowed in the Gluten Contamination Elimination Diet

 

 

 

 

[trents]

You could also have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms. There is no reliable test for it yet but some of the secondary tests for celaic disease (like the one you were positive for) can at least be an indicator. NCGS is 10x more common than celiac disease and some experts believe it can be a precursor to celiac disease. With either one, total abstinence from gluten is the remedy.

[pikauchu]

13 minutes ago, Wheatwacked said:

Hello pikauchu. Welcome to the forum.

The good news first. If you get a properly done biopsy for DH that is positive it is the Celiac antigens in the skin.  Do not pass go, you have Celiac Disease.  Second, with brother and sister already and a niece on the way to Celiac Disease diagnosis 40% of first degree relatives of a person with celiac disease, also have celiac disease. 

Plus ALL of your symptoms are classic symptoms of Celiac Disease.  Multiple vitamine deficiencies due to malabsorption.  Gall bladder and numbness could be low choline (liver, eggs,beef), Any brain fog. The tingling and hand problems could be choline or Thiamin B1 and any number of other vitamins. Magnesium, potassium, D. See this article on Vitamins and Celiac.

What are the chances that all of your symptoms are each an individual disease, and a strong family history. 

Do you NEED an official diagnosis to validate eating gluten free?  Because in the end all you need is to not eat wheat, barley, rye or anything else that may bother you and get your vitamin intake abone the minimum. This doctor is a jerk.  With him you will go through tests looking for other explanations.  For some it can take 10 years, many unneeded invasive procedures and in the end you still are sick.

Stuff to read while sitting on the toilet:

Gall Bladder, A Vital Organ That is Being Removed At Alarming Rates

How Celiac Disease May Affect Your Risk for Gallbladder Disease

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency

Possible Role of Vitamin D in Celiac Disease Onset

Products allowed/disallowed in the Gluten Contamination Elimination Diet

 

his is a lot of good information. I’m taking Norco for back pain as well and to be fair, it doesn’t tell me why I have it. I guess I was hoping to have an official diagnosis because I don’t want to just believe I have celiacs disease  and force my family to go through all these changes and it be for nothing. I also haven’t done it yet because I’m currently in the process of getting my kids tested as well due to the fact my daughter randomly throws up sometimes for no reason. We just assumed she had some sort of issue with hot dogs… but sometimes it’s just random food. Mostly hot dogs. 
 

so I figured if they test positive too then surely this doctor can’t ignore me and tell me that I’m right? If I listed all the symptoms I have legit all of them. I also have Graves’ disease while currently my thyroid is sitting at normal. So it just makes sense for me. I had the EDg today, my husband thinks I should get a different doctor while I get the kids tested… but if we all go gluten free… I worry about the kids.  and I’d have to talk to the school about gluten free options they have because they get free lunches and breakfast. It’s a big change. I guess I don’t want to feel like it’s all in my head.. but the last doctor that never took me seriously I ended up having a tumor in my head and lost half my hearing cause it ate my ear bones. I almost died. So while I wasn’t sure my gullbadder was the reason I can’t deny maybe it is connected and he basically said in the notes he would refer me to a general surgeon. Don’t wanna just cut stuff out for no reason and then still experience the issues. 

[pikauchu]

Is it possible that I have the onset of celiacs or maybe it hasn’t been active long enough to cause damage to the intestine? I didn’t have many of the symptoms except thyroid issues until I had my second son. That and severe comstipation when younger. 
 

not to mention I am also extremely gassy. When I have the gallbladder attack pain. I feel like a truck is on my. Severe pain. Distended stomach, tons of gas, neasea and I burp nonstop til it’s over. Burping releases some pain but not all. Pressure with a pillow under my stomach is the only way I can sleep and feel less pain in these attacks. 

[Wheatwacked]

Please don't go to the surgeon until you try gluten free diet for a month.  Most of your symptoms will improve if not go away.  If they don't then it is time to reassess. Be sure to supplement D, B1 vitamins, choline (or eat at least 3 eggs or a 12 ounce steak every day) and likely there are others.  

To some people like your doctor, you having Celiac is a threat to his lifestyle. Gluten is addictive and just like other addicts, they will do anything to protect their drug.

[Wheatwacked]

If som.ne says to give up apples for a month, no problem, But give up pancakes? World War III.

[pikauchu]

22 minutes ago, Wheatwacked said:

Please don't go to the surgeon until you try gluten free diet for a month.  Most of your symptoms will improve if not go away.  If they don't then it is time to reassess. Be sure to supplement D, B1 vitamins, choline (or eat at least 3 eggs or a 12 ounce steak every day) and likely there are others.  

To some people like your doctor, you having Celiac is a threat to his lifestyle. Gluten is addictive and just like other addicts, they will do anything to protect their drug.

Can they use symptoms going away to diagnose? I also was thinking about switching GI to a female dr in the same practice. May I ask why I’d be a threat if I had it? I don’t understand that. Also why would my dpi igg text positive if I didn’t have it? Would also my results be tainted by low carb diet? I was from January to end of February on low carb. I did low carb before and I actually didn’t feel that bad at all. I still had back pain though but I did feel more energetic. I still ate carbs but no more than 80 a day. 

22 minutes ago, Wheatwacked said:

If som.ne says to give up apples for a month, no problem, But give up pancakes? World War III.

Yeah I don’t want the kids to have to give up cake  they are already worried there. If they test positive I’d imagine that’s a high probability that’s what it is. 

[trents]

1 minute ago, pikauchu said:

Can they use symptoms going away to diagnose? I also was thinking about switching GI to a female dr in the same practice. May I ask why I’d be a threat if I had it? I don’t understand that. Also why would my dpi igg text positive if I didn’t have it? Would also my results be tainted by low carb diet? I was from January to end of February on low carb. I did low carb before and I actually didn’t feel that bad at all. I still had back pain though but I did feel more energetic. I still ate carbs but no more than 80 a day. 

If your low carb diet was largely excluding wheat products it could result in false negatives in the tTG-IGA test which is the centerpiece of celiac disease antibody testing. The tTG-IGA is a favored test because it combines good specificity for celiac disease along with good sensitivity. The dpi igg test is less specific for celiac disease than the tTG-IGA which means a positive for that one could be due to some other medical problem. Having said that, when people have jumped the gun by going gluten free before antibody testing, resulting in a negative tTG-IGA, the dpi igg test can be a tip off that they do have celiac disease.

Symptoms can be used in conjunction with test results to diagnose celiac disease but probably not by themselves.

The Mayo Clinic guidelines for a antibody pretest gluten challenge (for those already having been on a gluten-free diet or close) is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks. Did your low carb diet include that much gluten?

[pikauchu]

Yeah I was doing keto. I only did it for 2 months this year. Last year I did it for seven months and lost 70 pounds. I gave up in February because I was stressed with stuff in my life and my job means I can’t bring a lunch very easily  I dunno if this possibly affected the tests as I wasn’t initially seen for celiacs but gull bladder. 

[Wheatwacked]

The low carb diet can cause vitamin and mineral deficiencies. Maybe the one bad thing about it.  Mayo Clinic has updated Low Carb Diet Guide.

I started a couple weeks ago target less than 40 to undo my newfound diebetes. I use a spreadsheet to total my days intake. I found that I consistantly deficient on several from the RDA.

Calcium 39%; Potassium 66%; Manganese 41%;

Pantothenic Acid (B5) 98%; Thiamine 41%; Folate 38%;

Choline 57%; Vitamin E 55%; 

 

[Wheatwacked]

They make gluten free cake.

this is impertenent. I realize you don't want to deprive your kids. But what are you depriving them of. Years of mysterious illness?

My son was diagnosed at 3 months. In my stupidity I waited until I was 63 and suffered all those years.

[pikauchu]

5 hours ago, Wheatwacked said:

They make gluten free cake.

this is impertenent. I realize you don't want to deprive your kids. But what are you depriving them of. Years of mysterious illness?

My son was diagnosed at 3 months. In my stupidity I waited until I was 63 and suffered all those years.

Yeah this is true. Would it be better to start the whole family on gluten after I get them blood tested for it? Would them having positive help my doctor give me an official diagnosis? Or really worth it seeing a different doctor? 

[shadycharacter]

10 hours ago, pikauchu said:

Is it possible that I have the onset of celiacs or maybe it hasn’t been active long enough to cause damage to the intestine? I didn’t have many of the symptoms except thyroid issues until I had my second son. That and severe comstipation when younger. 
 

not to mention I am also extremely gassy. When I have the gallbladder attack pain. I feel like a truck is on my. Severe pain. Distended stomach, tons of gas, neasea and I burp nonstop til it’s over. Burping releases some pain but not all. Pressure with a pillow under my stomach is the only way I can sleep and feel less pain in these attacks. 

You could try low lactose, lactose free or use lactase enzyme supplements to see if that makes you feel better. People sometimes get temporarily/reversibly lactose intolerant as long as the intestines are affected by celiac, because lactase enzyme is released by the villii. Once the intestines heal on a gluten free diet the lactose tolerance may return.

[pikauchu]

30 minutes ago, shadycharacter said:

You could try low lactose, lactose free or use lactase enzyme supplements to see if that makes you feel better. People sometimes get temporarily/reversibly lactose intolerant as long as the intestines are affected by celiac, because lactase enzyme is released by the villii. Once the intestines heal on a gluten free diet the lactose tolerance may return.

I did have lactose intolerant as a kid and my kids do get a little unwell if they drink too much milk. Either constipation or stomach aches

 

[Wheatwacked]

I think of eating gluten free similar to getting vaccines. If you do, you are protected. If you don't you may or may not regret it. No way to know.  I have the unique position of hindsight. My son was diagnosed after weaning.  The doctor told us that when he started school the teachers would beg for Ritalin because he has ADD. He also recommended my wife and I start gluten free because 10% of first degree relatives were undiagnosed. We declined. neither of us had gastro issues. Back then, 1976, Celiac was only gastro. He was on Nutramigen for about 6 months, then a gluten free diet. Doing well.

     Moved back to hometown NJ in 1980.  By kindergarden he was sneaking breadstuff. The teachers requested Ritalin.  My wife was a head nurse on the orthopedic ward of a learning hospital, so after consultation with other professionals, including my original pediatrition, who started me on coffee when I was 10, we let him eat gluten and started him on Ritalin. The Ritalin was a morning miracle. Woke up wild as a hoot owl. Half hour after the dose it was like  Dr Jekyll and Mr Hyde.  Sweet and helpful.  No obvious indication of Celiac.  A competitive swimmer since 5 years old, he grew up well, graduated high school and became a full time ocean life guard with several heroism awards.  Was even on tv news.

     Cool story, right?  But along the way, all of those pesky "normal" signs of aging have been bothering him. Starting with  adolescent shin splints.  Along the way he has been developing those same symptoms that only after starting GFD myself at 63 I discovered were a result of Celiac Disease and subclinical nutrition deficiencies.  Most I have reversed, but Mike is still struggling in denial and my whole family has banned me from mentioning gluten.  My wife died in 2005 but forensically I know now that she also was Celiac. Allergies, asthma, miscarriages, endometriosis, abnormal weight gain, etc and finally Ovarian Cancer.  She died of maluntrition caused by the three courses of chemo that did not touch the cancer.  If I had know then.  So, not starting gluten free in 1976 is my only guilty regret.

     In retrospect, had we started gluten free back in 1976, he would have been less tempted (positive example instead of "do as I say, not as I do"). He would not be starting to suffer what I am just now healing from, and my wife would not be dead.

Just for the record, one of my brother's twin grandsons has been diagnosed two weeks ago at 18 months.  His dad is lifetime type 1 Diabetic and eats a ton of gluten. My neice chose vegan as a teen. So both sides of his family.

I hope this gives you a good perspective and wish you well.

Here is more good stuff to read:

 

[Wheatwacked]

2 minutes ago, pikauchu said:

my kids do get a little unwell if they drink too much milk.

Try 100% grass fed milk. It has less inflammatory fatty acids than the milk from cows fed palmitic acid to increase production.  Also it tastes like the milk I grew up on.  My brother says it tastes like ice cream.

[pikauchu]

4 minutes ago, Wheatwacked said:

I think of eating gluten free similar to getting vaccines. If you do, you are protected. If you don't you may or may not regret it. No way to know.  I have the unique position of hindsight. My son was diagnosed after weaning.  The doctor told us that when he started school the teachers would beg for Ritalin because he has ADD. He also recommended my wife and I start gluten free because 10% of first degree relatives were undiagnosed. We declined. neither of us had gastro issues. Back then, 1976, Celiac was only gastro. He was on Nutramigen for about 6 months, then a gluten free diet. Doing well.

     Moved back to hometown NJ in 1980.  By kindergarden he was sneaking breadstuff. The teachers requested Ritalin.  My wife was a head nurse on the orthopedic ward of a learning hospital, so after consultation with other professionals, including my original pediatrition, who started me on coffee when I was 10, we let him eat gluten and started him on Ritalin. The Ritalin was a morning miracle. Woke up wild as a hoot owl. Half hour after the dose it was like  Dr Jekyll and Mr Hyde.  Sweet and helpful.  No obvious indication of Celiac.  A competitive swimmer since 5 years old, he grew up well, graduated high school and became a full time ocean life guard with several heroism awards.  Was even on tv news.

     Cool story, right?  But along the way, all of those pesky "normal" signs of aging have been bothering him. Starting with  adolescent shin splints.  Along the way he has been developing those same symptoms that only after starting GFD myself at 63 I discovered were a result of Celiac Disease and subclinical nutrition deficiencies.  Most I have reversed, but Mike is still struggling in denial and my whole family has banned me from mentioning gluten.  My wife died in 2005 but forensically I know now that she also was Celiac. Allergies, asthma, miscarriages, endometriosis, abnormal weight gain, etc and finally Ovarian Cancer.  She died of maluntrition caused by the three courses of chemo that did not touch the cancer.  If I had know then.  So, not starting gluten free in 1976 is my only guilty regret.

     In retrospect, had we started gluten free back in 1976, he would have been less tempted (positive example instead of "do as I say, not as I do"). He would not be starting to suffer what I am just now healing from, and my wife would not be dead.

Just for the record, one of my brother's twin grandsons has been diagnosed two weeks ago at 18 months.  His dad is lifetime type 1 Diabetic and eats a ton of gluten. My neice chose vegan as a teen. So both sides of his family.

I hope this gives you a good perspective and wish you well.

Here is more good stuff to read:

 

Yeah this does give me some perspective. I just have always been told I’m crazy or I look too hard into things. But I was the only one who believed there was something wrong with my ear, and lo and behold a cholosteatoma (excuse my spelling) and it made me half deaf. Doctors told my parents I just didn’t want to listen. I got a second opinion when I was 18 and bam there it was. I advocated for myself. That’s why I guess I’m trying so hard for an official diagnosis. I don’t want to change my kids lives if I’m just being paranoid or whatever. But people always think my kids are adhd or something or what’s wrong with them, or my daughter is very forgetful at 8. Lol but yet she’s extremely smart. 
 

my son is always tired and irritated even with 10 hours of sleep… and it’s rough in school with his energy. It just seems to honestly fit. My sister told me this morning her daughter and me spiked the same test with almost the same number and her doctor is refusing to do the edg on her. Just seems like if you don’t fit into the typical box, they try and look somewhere else. My brother says just all go gluten free. I probably will. My kids are getting the blood tests on Tuesday and then I’ll go from there. I’m also hoping my biopsy has some positive result even though it said it looked normal in the procedure. 
 

but if my parents had gotten me diagnosed correctly the first time, I may not be so deaf.. and maybe my ear wouldn’t have gotten so messed up. It almost killed me as it was eating my nerves in my face. So I guess maybe that’s why I’m so hung up on a diagnosis. o think I just need to get over it and either just go gluten free or get a new doctor after I get my biopsy results back. There’s just too many symptoms for this to be nothing. 
 

and hopefully that rash comes back as DH. Just waiting for the appointment as I was just referred . 

[Wheatwacked]

The biopsy needs to be clear skin, less than a centimeter from the rash. Apparently not common knowledge in many dermatology offices.

"First of all, a new skin biopsy of perilesional skin for DIF should be performed,": The diagnosis and treatment of dermatitis herpetiformis

[pikauchu]

6 minutes ago, Wheatwacked said:

The biopsy needs to be clear skin, less than a centimeter from the rash. Apparently not common knowledge in many dermatology offices.

"First of all, a new skin biopsy of perilesional skin for DIF should be performed,": The diagnosis and treatment of dermatitis herpetiformis

Yeah I can still test positive for that if the edg biopsy says negative? That would mean celiacs disease, guess I just wonder why there’s no damage to villi if that’s the case. Still off by him saying looked normal, where maybe microscopic is still showing something. I hate waiting 

[shadycharacter]

49 minutes ago, pikauchu said:

Yeah I can still test positive for that if the edg biopsy says negative? That would mean celiacs disease, guess I just wonder why there’s no damage to villi if that’s the case. Still off by him saying looked normal, where maybe microscopic is still showing something. I hate waiting 

I wonder if there could be something like a "compensated" celiac disease. I'm imagining a mild case where there is an autoimmune attack on the cells but the body is able to compensate with an increased renewal rate, up to a point. It'd still be good to avoid gluten, but perhaps such a scenario could explain a negative biopsy result in the presence of antibodies. Epithelial cells in the intestines have a high turnover rate anyway, a matter of days. 

[pikauchu]

3 minutes ago, shadycharacter said:

I wonder if there could be something like a "compensated" celiac disease. I'm imagining a mild case where there is an autoimmune attack on the cells but the body is able to compensate with an increased renewal rate, up to a point. It'd still be good to avoid gluten, but perhaps such a scenario could explain a negative biopsy result in the presence of antibodies. Epithelial cells in the intestines have a high turnover rate anyway, a matter of days. 

I wonder if that’s possible. I do not have the results back yet but he was very confident it looked normal to my husband. I hope the rash is DH as it would improve the chances for an early diagnosis. I just think he’s not taking this seriously or following a typical diagnosis when I’ve never fit into typical. 

[trents]

pikauchu, have you considered my suggestion in an earlier post about NCGS instead of celiac disease? That would explain the celiac-like symptoms in the absence of villi damage as well, perhaps, the weak positive score on the secondary antibody test.

Edited May 17, 2023 by trents

[pikauchu]

11 minutes ago, trents said:

pikauchu, have you considered my suggestion in an earlier post about NCGS instead of celiac disease? That would explain the celiac-like symptoms in the absence of villi damage as well, perhaps, the weak positive score on the secondary antibody test.

Yes, I def am going to be talking to them about this too. I was reading up on it, is that some kind of precursor to celiacs? 
 

would that also cause the DH rash? I’m hoping the biopsy will tel me something new but I just hate waiting. Wait we must though lol

[trents]

43 minutes ago, pikauchu said:

Yes, I def am going to be talking to them about this too. I was reading up on it, is that some kind of precursor to celiacs? 
 

would that also cause the DH rash? I’m hoping the biopsy will tel me something new but I just hate waiting. Wait we must though lol

Some experts believe that NCGS can be a precursor to celiac disease.

NCGS would not cause a DH rash. But, it has not been confirmed that you have DH. Make sure you find a dermatologist that knows the correct way to biopsy DH. Not all do.

Edited May 17, 2023 by trents