My doctors' differing opions/long saga....I'm so confused and sick of feeling sick.

[clc08]

Long history which I understand is common.  Early years:  horrible eczema. Anxiety.   Debilitating menstrual periods...then 5 spontaneous abortions, then infertility, and finally got a live, healthy baby in 1984  after massive amounts of progesterone.  I'm a R.N.  2 years after childbirth  I began having many stools every day, nausea,  massive weight loss, and had to drop out of nursing school.  Finally the head of the pediatric allergy clinic at Children's Hospital in Philly diagnosed a soybean and white potato allergy.  OK ... fast forward to 2014.  I was having major panic attacks...went to a D.O. who did blood tests for many food allergies, and told me to avoid gluten, eggs, milk, for 6 months.   I questioned the tests as being valid   IgG bloods.... I started doing that then went to another doc who did a  blood celiac panel which came back negative and he told me I had no issues and to eat anything and everything.  (I had not been consuming much gluten pre-test.)  Finally symptoms were getting worse...mine originally were mainly neurological.  Anxiety, dizziness, numbness/tingling in feet.  Occasional bloat.   in 2018 A functional med doc who had a regular MD from Indiana University with a specialty in integrative medicine ran more bloodwork...and did a salivary gliaden antibody test which tested at 4, negative.  He still thought I should avoid gluten.  I did, and felt better, but fought with the idea of no formal diagnosis, and questioned the validity of the saliva test.  As far as I know, it is not diagnostic for Celiac, only for markers.   Anyway, sometimes I ate gluten-free, and then sometimes I would feel better, tell myself the whole thing was a mistake and eat it again...sometimes for weeks.  The gluten free bread products seemed to bother me.     Then I would start feeling bad again and go gluten-free again with occasional cheats which were met with increasing symptoms....nasty headaches, horrendous anxiety, worsening dizziness, more neuropathy, insomnia, joint pain,  and now with urinary urgency and symptoms of overactive bladder,  low gut discomfort, so now the gut was becoming involved.  I also presented with a rash he said was classis DH. on mainly my sacrum and some on an arm.  My eczema came back when I ate gluten.  I finally figured out I am intolerant of gums, i.e. Xanthan, Guar,  in so many of the gluten-free flours and products, Quinoa and Carageenan.  Most recently even certified gluten-free oats trigger me. He repeated my salivary gliaden antibody test 2 years ago and I had been eating  some gluten, but my level went from 4 (neg) to 14 (borderline) and he said with the rash and symptomology I should never eat gluten again.  I asked for a gluten challenge, eating 2G  a day for 6 weeks then another panel and endoscopy and he said, "I really don't want to put you through it the way you react after eating it for only a week."  Just listen to your body.  Don't eat gluten again, ever. really.   

Last week I tried a bowl of certified gluten-free oatmeal Bob's Red Mill.  No deal.  Last night I ate DIGiorno gluten free pepperoni pizza and today I feel like crawling in bed.  Joints hurt, I hurt all over, actually.  I have diarrhea and slight nausea.   My bladder feels inflamed.  My head hurts.  I am tearful.  My sacrum itches again. I could crawl in bed and stay there.  

 

This was my long story.  Is there any validity to the salivary gliadin antibody tests?  At first he said he thought I was simply NCGS, but now he thinks I am Celiac.  I stick to the diet then I feel better and think I don't have a problem (crazy thinking?) and start eating it again only to feel worse each time I repeat the cycle.   Now, in addition to the neurological symptoms so common with NCGS, I am starting to have more GI symptoms, i.e. diarrhea, or constipation, bloat, reflux, etc.   I keep reading studies/papers that say unless a person is Celiac, the diet is not a good idea, since it is so limiting.  So I cave.

 

Any comments appreciated.  Thanks.

[trents]

I don't know that there is anything we can tell you that you don't already know. Any antibody testing for celiac disease would require you to be eating significant amounts of gltuen (equivalent to two slices of wheat bread daily for 4-6 weeks and an endoscopy with biopsy would require eating that same amount of gluten for two weeks leading up to the procedure date. The problem here with regard to testing is your inconsistency with gluten consumption.

Also, there are gluten disorder experts who believe that NCGS can be a precursor to celiac disease. But you are struggling with what so many struggle with who don't have an official Dx of celaic disease and that is rationalization. You know that you feel better when not consuming gluten but "maybe it is just a coincidence".

[Wheatwacked]

I commisserate with your story. My wife's was almost word for word. A nurse, allergies, miscarriages, endometriosis, passed of malnutrion after chemo for ovarian cancer at 57. Our son born in 1976 bloated up like a Biafra famine baby as soon as he was weaned. Was colicky from the get go. My mom just said that I got what I gave. Found a pediactric GI who was the only one in a population of 6 million who treated it and he only had 13 Celiac patients. Nutramigen was the prescription. Seems that both Kathy and I had undiagnosed Celiac and as soon as he was presented with wheat he reacted. Kathy never was diagnosed but in retrospect. In 2014 age 63 I was sick as a dog, unable to stand more than a few minutes, often crawled to the bathroom. One day I look down and saw a larger copy of my Celiac bloated infant. I count 19 different symptoms some like permanently congested sinuses as far back as I remember, and prostate hypertrophy at age 21.  All showed quick improvement but the real healing only started when I realiized that I was still not getting even the minimum of about 10 vitamins and minerals. At 72 I keep getting better while gluten consuming friends and relatives get sicker.

I approached it like I moved to a different country where my old favorites were not available. You will learn it is a better way to eat.

Since DH is only caused by gluten, that in and of itself is diagnostic of Celiac Disease.

6 hours ago, clc08 said:

I also presented with a rash he said was classis DH.

6 hours ago, clc08 said:

I ate DIGiorno gluten free pepperoni pizza and today I feel like crawling in bed. 

There is a whole thread on this forum about bad reactions to Digiorno gluten-free pizza.

 

6 hours ago, clc08 said:

unless a person is Celiac, the diet is not a good idea, since it is so limiting. 

Wheat is the staff of life, so is sacrosanct.

[patty-maguire]

19 hours ago, clc08 said:

Long history which I understand is common.  Early years:  horrible eczema. Anxiety.   Debilitating menstrual periods...then 5 spontaneous abortions, then infertility, and finally got a live, healthy baby in 1984  after massive amounts of progesterone.  I'm a R.N.  2 years after childbirth  I began having many stools every day, nausea,  massive weight loss, and had to drop out of nursing school.  Finally the head of the pediatric allergy clinic at Children's Hospital in Philly diagnosed a soybean and white potato allergy.  OK ... fast forward to 2014.  I was having major panic attacks...went to a D.O. who did blood tests for many food allergies, and told me to avoid gluten, eggs, milk, for 6 months.   I questioned the tests as being valid   IgG bloods.... I started doing that then went to another doc who did a  blood celiac panel which came back negative and he told me I had no issues and to eat anything and everything.  (I had not been consuming much gluten pre-test.)  Finally symptoms were getting worse...mine originally were mainly neurological.  Anxiety, dizziness, numbness/tingling in feet.  Occasional bloat.   in 2018 A functional med doc who had a regular MD from Indiana University with a specialty in integrative medicine ran more bloodwork...and did a salivary gliaden antibody test which tested at 4, negative.  He still thought I should avoid gluten.  I did, and felt better, but fought with the idea of no formal diagnosis, and questioned the validity of the saliva test.  As far as I know, it is not diagnostic for Celiac, only for markers.   Anyway, sometimes I ate gluten-free, and then sometimes I would feel better, tell myself the whole thing was a mistake and eat it again...sometimes for weeks.  The gluten free bread products seemed to bother me.     Then I would start feeling bad again and go gluten-free again with occasional cheats which were met with increasing symptoms....nasty headaches, horrendous anxiety, worsening dizziness, more neuropathy, insomnia, joint pain,  and now with urinary urgency and symptoms of overactive bladder,  low gut discomfort, so now the gut was becoming involved.  I also presented with a rash he said was classis DH. on mainly my sacrum and some on an arm.  My eczema came back when I ate gluten.  I finally figured out I am intolerant of gums, i.e. Xanthan, Guar,  in so many of the gluten-free flours and products, Quinoa and Carageenan.  Most recently even certified gluten-free oats trigger me. He repeated my salivary gliaden antibody test 2 years ago and I had been eating  some gluten, but my level went from 4 (neg) to 14 (borderline) and he said with the rash and symptomology I should never eat gluten again.  I asked for a gluten challenge, eating 2G  a day for 6 weeks then another panel and endoscopy and he said, "I really don't want to put you through it the way you react after eating it for only a week."  Just listen to your body.  Don't eat gluten again, ever. really.   

Last week I tried a bowl of certified gluten-free oatmeal Bob's Red Mill.  No deal.  Last night I ate DIGiorno gluten free pepperoni pizza and today I feel like crawling in bed.  Joints hurt, I hurt all over, actually.  I have diarrhea and slight nausea.   My bladder feels inflamed.  My head hurts.  I am tearful.  My sacrum itches again. I could crawl in bed and stay there.  

 

This was my long story.  Is there any validity to the salivary gliadin antibody tests?  At first he said he thought I was simply NCGS, but now he thinks I am Celiac.  I stick to the diet then I feel better and think I don't have a problem (crazy thinking?) and start eating it again only to feel worse each time I repeat the cycle.   Now, in addition to the neurological symptoms so common with NCGS, I am starting to have more GI symptoms, i.e. diarrhea, or constipation, bloat, reflux, etc.   I keep reading studies/papers that say unless a person is Celiac, the diet is not a good idea, since it is so limiting.  So I cave.

 

Any comments appreciated.  Thanks.

Celiac disease is diagnosed by a positive tTg blood test followed up with endoscopy to confirm. I don’t know about the specific test you had, but it doesn’t diagnose celiac disease. 
 

This doesn’t mean you don’t have celiac. As you said you weren’t eating much gluten when you had the test so you likely got a false negative. 
 

You might consider genetic testing. It doesn’t diagnose celiac but it does tell you if you have the genes for it. Coupled with your symptoms, many doctors would consider that good enough for diagnosis. 

Non celiac gluten sensitivity (NCGS) is also a thing and the gastro symptoms are similar to celiac. With your history of reproductive issues and dh, it really does sound like celiac. 
 

As for the diet being bad if you don’t have celiac, that depends on how you do the diet. If you eat a lot of processed gluten free products, that’s not great. If you focus your diet on naturally gluten free whole foods then that’s a healthy diet for anyone. 
 

The trouble you’ve had sticking with the diet is the classic downside of not having a diagnosis. You second guess yourself. My suggestion is you do one of two things:

1. Do the gluten challenge and get a proper diagnosis. 
2. Decide for yourself (with or without the genetic test) that you have celiac based on your symptoms and the fact that you feel better without gluten and get serious about sticking to the diet. 
 

Here are a few books I recommend:

Celiac Disease A Hidden Epidemic by Dr. Peter Green

Mayo Clinic: Going Gluten Free by Dr. Joseph Murray

Gluten Freedom by Dr. Alessio Fasano 

 

All the best!
 

 

[clc08]

Thanks to everybody for the responses. I am going to see my doctor February 20 and minimally ask for genetic testing, otherwise when I remember the rash and the symptoms and progression A couple of things stood out to me which one was rationalization and the second one was the story told of one just like mine. I need to accept it and move forward with strict gluten-free diet and stop messing around.

[Connie Hess]

On 1/30/2023 at 2:20 PM, clc08 said:

Long history which I understand is common.  Early years:  horrible eczema. Anxiety.   Debilitating menstrual periods...then 5 spontaneous abortions, then infertility, and finally got a live, healthy baby in 1984  after massive amounts of progesterone.  I'm a R.N.  2 years after childbirth  I began having many stools every day, nausea,  massive weight loss, and had to drop out of nursing school.  Finally the head of the pediatric allergy clinic at Children's Hospital in Philly diagnosed a soybean and white potato allergy.  OK ... fast forward to 2014.  I was having major panic attacks...went to a D.O. who did blood tests for many food allergies, and told me to avoid gluten, eggs, milk, for 6 months.   I questioned the tests as being valid   IgG bloods.... I started doing that then went to another doc who did a  blood celiac panel which came back negative and he told me I had no issues and to eat anything and everything.  (I had not been consuming much gluten pre-test.)  Finally symptoms were getting worse...mine originally were mainly neurological.  Anxiety, dizziness, numbness/tingling in feet.  Occasional bloat.   in 2018 A functional med doc who had a regular MD from Indiana University with a specialty in integrative medicine ran more bloodwork...and did a salivary gliaden antibody test which tested at 4, negative.  He still thought I should avoid gluten.  I did, and felt better, but fought with the idea of no formal diagnosis, and questioned the validity of the saliva test.  As far as I know, it is not diagnostic for Celiac, only for markers.   Anyway, sometimes I ate gluten-free, and then sometimes I would feel better, tell myself the whole thing was a mistake and eat it again...sometimes for weeks.  The gluten free bread products seemed to bother me.     Then I would start feeling bad again and go gluten-free again with occasional cheats which were met with increasing symptoms....nasty headaches, horrendous anxiety, worsening dizziness, more neuropathy, insomnia, joint pain,  and now with urinary urgency and symptoms of overactive bladder,  low gut discomfort, so now the gut was becoming involved.  I also presented with a rash he said was classis DH. on mainly my sacrum and some on an arm.  My eczema came back when I ate gluten.  I finally figured out I am intolerant of gums, i.e. Xanthan, Guar,  in so many of the gluten-free flours and products, Quinoa and Carageenan.  Most recently even certified gluten-free oats trigger me. He repeated my salivary gliaden antibody test 2 years ago and I had been eating  some gluten, but my level went from 4 (neg) to 14 (borderline) and he said with the rash and symptomology I should never eat gluten again.  I asked for a gluten challenge, eating 2G  a day for 6 weeks then another panel and endoscopy and he said, "I really don't want to put you through it the way you react after eating it for only a week."  Just listen to your body.  Don't eat gluten again, ever. really.   

Last week I tried a bowl of certified gluten-free oatmeal Bob's Red Mill.  No deal.  Last night I ate DIGiorno gluten free pepperoni pizza and today I feel like crawling in bed.  Joints hurt, I hurt all over, actually.  I have diarrhea and slight nausea.   My bladder feels inflamed.  My head hurts.  I am tearful.  My sacrum itches again. I could crawl in bed and stay there.  

 

This was my long story.  Is there any validity to the salivary gliadin antibody tests?  At first he said he thought I was simply NCGS, but now he thinks I am Celiac.  I stick to the diet then I feel better and think I don't have a problem (crazy thinking?) and start eating it again only to feel worse each time I repeat the cycle.   Now, in addition to the neurological symptoms so common with NCGS, I am starting to have more GI symptoms, i.e. diarrhea, or constipation, bloat, reflux, etc.   I keep reading studies/papers that say unless a person is Celiac, the diet is not a good idea, since it is so limiting.  So I cave.

 

Any comments appreciated.  Thanks.

It will never get better only worse if you continue to eat like you do. You must get some personal discipline. You are having signs of a gluten problem and believe you me, you have not gotten to the worst yet. I believe you are also having food allergies. I have the same horrible reaction to many foods .  Take one or two foods at a time and be very diligent about avoiding them and gluten. You must read every package and cook at home.  I have the same reaction to shellfish, bell peppers and soy. Less severe to many more foods but all of them create that same issue. Also let me add that if you are having Hashimotos or an iron problem it makes these symptoms 10 times worse. If you have been on gluten it can take up to two months to get it out of your blood stream. 

[clc08]

1 hour ago, Connie Hess said:

It will never get better only worse if you continue to eat like you do. You must get some personal discipline. You are having signs of a gluten problem and believe you me, you have not gotten to the worst yet. I believe you are also having food allergies. I have the same horrible reaction to many foods .  Take one or two foods at a time and be very diligent about avoiding them and gluten. You must read every package and cook at home.  I have the same reaction to shellfish, bell peppers and soy. Less severe to many more foods but all of them create that same issue. Also let me add that if you are having Hashimotos or an iron problem it makes these symptoms 10 times worse. If you have been on gluten it can take up to two months to get it out of your blood stream. 

Thank you for your reply. I recently went to the doctor and had full blood panels.. luckily, all were normal. I agree with you that I am going to have to be more strict. I read labels like crazy but sometimes I think I get gluten even though I look up the item and it says it’s gluten-free it’s not certified so I don’t know maybe it’s cross contaminated or something. I cook at home 99% of the time and I love to cook and it’s a good thing. I eat very little Processed foods of any sort. I did break down and buy a loaf of gluten-free Bakehouse canyon bread and I will see how that goes and I do use jovial gluten-free pasta’s. I already know I’m allergic to soy beans and supposedly white potatoes as well. I do suspect that I can’t eat oatmeal anymore I think the avenin is  too close to gluten.  I asked my doctor again about a gluten challenge and he really just does not want to do it to me. He said with a rash is that you get and the way you feel why even do that to yourself.

I asked my doctor again about a gluten challenge and he really just does not want to do it to me. He said with the rashes you get and the way you feel why even do that to yourself.   I am in the process of going through now all of my make up and personal care products. I already am using a gluten-free shampoo and as far as I have found so far my make up is minimal but it is also gluten-free as are my lip balms. It certainly is a process.

 

Again, thank you for thank you for answering.