Help needed regarding getting tested

[water]

Hi , I needed to get some doubts cleared before getting tested for celiac. First let me tell you why I am getting tested. I have no usual symptoms of celiac, no bloating, no diarrhea, no stomach pain, no headaches. I have a little constipation from time to time. I am a thin guy and it doesnt matter how much i eat i look like am starving. I suffer from fatigue. I have very slight sensation loss in hands and feet. I have dandruff problem that would not go even after using all kinds of medicines and shampoos. Also have back acne. I am suffering from a condition called linear scleroderma and  i am taking immune system suppressing drugs called cellcept for it. So my question is will the test be reliable if am taking immunosupressant drugs?  I cant stop taking drugs more than a few days. Also the drug is known for doing intestinal damage as a side effect. so am not sure how much the biopsy is gonna be useful. I went gluten free for one and a half month, its has not helped me with dandruff . I think my mind had a little more clarity when i went gluten free,  but again it could be placebo. But i'll have to tell you I have noticed getting sleepy after eating food made of wheat This group has a lot of wonderful people with a wealth of knowledge. so please help me how should i go about it? Any help would be greatly appreciated.

 

 

[cyclinglady]

1 hour ago, water said:

Hi , I needed to get some doubts cleared before getting tested for celiac. First let me tell you why I am getting tested. I have no usual symptoms of celiac, no bloating, no diarrhea, no stomach pain, no headaches. I have a little constipation from time to time. I am a thin guy and it doesnt matter how much i eat i look like am starving. I suffer from fatigue. I have very slight sensation loss in hands and feet. I have dandruff problem that would not go even after using all kinds of medicines and shampoos. Also have back acne. I am suffering from a condition called linear scleroderma and  i am taking immune system suppressing drugs called cellcept for it. So my question is will the test be reliable if am taking immunosupressant drugs?  I cant stop taking drugs more than a few days. Also the drug is known for doing intestinal damage as a side effect. so am not sure how much the biopsy is gonna be useful. I went gluten free for one and a half month, its has not helped me with dandruff . I think my mind had a little more clarity when i went gluten free,  but again it could be placebo. But i'll have to tell you I have noticed getting sleepy after eating food made of wheat This group has a lot of wonderful people with a wealth of knowledge. so please help me how should i go about it? Any help would be greatly appreciated.

 

 

Welcome!  

The only way to find out if you have celiac disease is to get tested.   When were you gluten free?  You should be on gluten for 8 to 12 weeks (I would go for the 12 weeks) prior to the blood draw.  I don’t know about the immunosuppressant and the impact it might have on your celiac disease test results.  Talk to your doctor.  Here are the tests.  Insist on a full panel.

Open Original Shared Link

If you do have celiac disease, a gluten diet is the only known treatment.  But it takes time for healing.  Often a few years depending on the collateral damage.  So, six weeks is not enough time for most.  

How is your diet?  Eating lots of fresh fruit, veggies, etc?  You might think about reducing or eliminating most processed foods for a while and keep a food journal.  This can only help and not hurt anyone struggling to feel well.  (My opinion as I am not a doctor and just a Mom!)  Identifying Foods and other environmental triggers can help.  For example,  besides celiac disease, I can not tolerate garlic or onions still!  These are supposed to be good for you, right? But not for me.  They flare up my Rosacea.  Right there in my face.  No denying it.  You might have a particular trigger and a food journal can help you identify it.  

Be sure to get enough rest and light excercise.  I tell my niece this (she has Crohn’s), but hard to do when you are young and in college!  

 

[Awol cast iron stomach]

Welcome.

I do think you should check into and further inquire about the immunosuppressant prior to your testing, as  cycling lady suggests.

It's been many years since my immuno courses in college,( so I'm not up to date), but I would be concerned that the immunosuppressant could possibly affect your results. 

The dandruff skin issues after trying gluten-free in my opinion takes time. My skin gets trashed I get all kinds of issues, hair, skin and then some. I do have many other symptoms you don't, but I was considered IBS for decades since "celiac was rare" now of course it's slowly being discovered not so rare and a chamoleon. Let's not forget NCGS the "cousin" to celiac .

My skin issues beyond gluten is fall out from nutrition and dehydration coupled with gluten consumption. Even after gluten is removed I have to work to fix Vitamin, mineral, nutrient deficiencies and hydrate like crazy. I'm a year post challenge and my skin is still not healthy for me . My heels are sandpaper, so I would not view the lack of dandruff cessation as a indicator that gluten is not a potential issue for you.

I wish you luck on your journey and path. Keep us posted.

 

[Victoria1234]

Gluten might not have anything at all to do with the dandruff issue. Is it sebborea dermatitis according to your dermatologist? If so, I had that and I was 10 years gluten-free. One day fairly recently it see,s to have gone into remission, no idea why. But the shampoos didn't do it much good when I tried them. Just made it slightly less severe. Or it might disappear for you when you are 1 year gluten-free. It  is weird stuff and the derm docs don't seem to understand it at all.

i seem to recall hearing before you can't be on the immunosuppressant drugs and do the panel, but I'm not sure. Try searching the forums and see if you can find some threads on it. Of course your doc should know too.

[Ennis-TX]

I have nerve issues from gluten ataxia, and had and still have issues with constipation from gluten exposures. Funny thing about the back acne and the dandruff issues. Mine is caused by dairy... I get really odd dandruff like oily crud I could scrap off my scalp with my finger nails, and I get break out of little pimples on my back, some are deep ones when I consume even traces of dairy. I have been lactose intolerant for over a decade, any dairy contamination in some foods will trigger the heads within a few days. Recall growing up eating dairy I always had really bad acne and very oily nasty skin and scalp.

I might look into getting tested if I was you, talk to a doctor about it, note you do have to be eating gluten before the test. Other thoughts as mentioned by others keep a  food dairy, wright down everything you eat, spices, condiments, how you fix stuff. and how you feel hours later. With celiac you often develop other food intolerance issues and random allergies.

Oh and eating celaic gluten free is a bit different then FAD diet gluten free, any kind of cross contamination can trigger antibodies to cause damage for weeks up to a month. So you pretty much have to stop eating out, change out all your cook ware, get new condiment bottles and really read everything you bring into the house....I suggest reading over the newbie 101 section to get a idea.

[water]

On 10/12/2017 at 2:45 AM, Victoria1234 said:

Gluten might not have anything at all to do with the dandruff issue. Is it sebborea dermatitis according to your dermatologist? If so, I had that and I was 10 years gluten-free. One day fairly recently it see,s to have gone into remission, no idea why. But the shampoos didn't do it much good when I tried them. Just made it slightly less severe. Or it might disappear for you when you are 1 year gluten-free. It  is weird stuff and the derm docs don't seem to understand it at all.

i seem to recall hearing before you can't be on the immunosuppressant drugs and do the panel, but I'm not sure. Try searching the forums and see if you can find some threads on it. Of course your doc should know too.

When I first had this dandruff problem like this it went away by its own. Then it came back. I have a autoimmune disease so it could give wrong test results and the fact that am taking drugs will add to that problem. I am not going to doctor any time soon. So please ask around if drugs affects the tests, if you get a chance. It will be very helpful. Thank you really for your reply.

[water]

On 10/12/2017 at 4:45 AM, Ennis_TX said:

I have nerve issues from gluten ataxia, and had and still have issues with constipation from gluten exposures. Funny thing about the back acne and the dandruff issues. Mine is caused by dairy... I get really odd dandruff like oily crud I could scrap off my scalp with my finger nails, and I get break out of little pimples on my back, some are deep ones when I consume even traces of dairy. I have been lactose intolerant for over a decade, any dairy contamination in some foods will trigger the heads within a few days. Recall growing up eating dairy I always had really bad acne and very oily nasty skin and scalp.

I might look into getting tested if I was you, talk to a doctor about it, note you do have to be eating gluten before the test. Other thoughts as mentioned by others keep a  food dairy, wright down everything you eat, spices, condiments, how you fix stuff. and how you feel hours later. With celiac you often develop other food intolerance issues and random allergies.

Oh and eating celaic gluten free is a bit different then FAD diet gluten free, any kind of cross contamination can trigger antibodies to cause damage for weeks up to a month. So you pretty much have to stop eating out, change out all your cook ware, get new condiment bottles and really read everything you bring into the house....I suggest reading over the newbie 101 section to get a idea.

The problem is I already have an autoimmune condition. And am taking drugs for it. So it could affect test results for celiac.   Please ask around if drugs for other autoimmune disease affect the test for celiac. It would be very helpful. Thank you very much for your reply.

[water]

On 10/11/2017 at 10:55 PM, Awol cast iron stomach said:

Welcome.

I do think you should check into and further inquire about the immunosuppressant prior to your testing, as  cycling lady suggests.

It's been many years since my immuno courses in college,( so I'm not up to date), but I would be concerned that the immunosuppressant could possibly affect your results. 

The dandruff skin issues after trying gluten-free in my opinion takes time. My skin gets trashed I get all kinds of issues, hair, skin and then some. I do have many other symptoms you don't, but I was considered IBS for decades since "celiac was rare" now of course it's slowly being discovered not so rare and a chamoleon. Let's not forget NCGS the "cousin" to celiac .

My skin issues beyond gluten is fall out from nutrition and dehydration coupled with gluten consumption. Even after gluten is removed I have to work to fix Vitamin, mineral, nutrient deficiencies and hydrate like crazy. I'm a year post challenge and my skin is still not healthy for me . My heels are sandpaper, so I would not view the lack of dandruff cessation as a indicator that gluten is not a potential issue for you.

I wish you luck on your journey and path. Keep us posted.

 

The problem is you can attribute any bad bodily Conditions to gluten. So it very difficult to determine what is caused by gluten and what is not.

My problem is I already have an autoimmune condition so it could affect the celiac test results. The fact that am taking drugs for it only adds to the inaccuracies. I won't be going to doctor anytime soon. So if you get any opportunities , please ask around if immunosuppressants affect test or not. It would be very helpful.

Regarding ncgs although they have made some headway into it but still the jury is out on it. It couldn't be even a thing. Everything is so confusing.

Thanks for responding to me. Much appreciated.

 

[water]

On 10/11/2017 at 7:43 PM, cyclinglady said:

Welcome!  

The only way to find out if you have celiac disease is to get tested.   When were you gluten free?  You should be on gluten for 8 to 12 weeks (I would go for the 12 weeks) prior to the blood draw.  I don’t know about the immunosuppressant and the impact it might have on your celiac disease test results.  Talk to your doctor.  Here are the tests.  Insist on a full panel.

Open Original Shared Link

If you do have celiac disease, a gluten diet is the only known treatment.  But it takes time for healing.  Often a few years depending on the collateral damage.  So, six weeks is not enough time for most.  

How is your diet?  Eating lots of fresh fruit, veggies, etc?  You might think about reducing or eliminating most processed foods for a while and keep a food journal.  This can only help and not hurt anyone struggling to feel well.  (My opinion as I am not a doctor and just a Mom!)  Identifying Foods and other environmental triggers can help.  For example,  besides celiac disease, I can not tolerate garlic or onions still!  These are supposed to be good for you, right? But not for me.  They flare up my Rosacea.  Right there in my face.  No denying it.  You might have a particular trigger and a food journal can help you identify it.  

Be sure to get enough rest and light excercise.  I tell my niece this (she has Crohn’s), but hard to do when you are young and in college!  

 

 For one month I have been back on gluten diet. I will take test after 3 months. I will not going to doctor for that period . So please ask around if you get an opportunity that  if drugs can affect celiac test results or not. It will be very helpful.

Is your niece also a Celiac ? Is she on a gluten free diet? What else does she avoids eating ?

Thanks very much for your reply. Really appreciate it.

[Gluten-free-01]

15 hours ago, water said:

Regarding ncgs although they have made some headway into it but still the jury is out on it. It couldn't be even a thing. Everything is so confusing.

It's not that confusing. NCGS is a real thing. Please don't believe in the myth that NCGS may not even exist. It's a genuine condition which can have a profound impact on almost all aspects of a person's life (especially if the condition is unrecognized!): both physical and mental health, all kinds of relationships (with family members, friends, partners, colleagues), career, job performance, your energy levels - how much you're able to accomplish in a day, ability to be financially independent, education level, study results, continuous learning etc. 

15 hours ago, water said:

My problem is I already have an autoimmune condition so it could affect the celiac test results. The fact that am taking drugs for it only adds to the inaccuracies. I won't be going to doctor anytime soon. So if you get any opportunities , please ask around if immunosuppressants affect test or not. It would be very helpful.

Call a GI doctor and ask them. You don't have to go there in person to ask about this. After you do this, you can also call another one just to make sure the info the first one gave is correct. My suggestion is that you get 2-3 independent opinions.       

[water]

2 hours ago, Gluten_free_01 said:

It's not that confusing. NCGS is a real thing. Please don't believe in the myth that NCGS may not even exist. It's a genuine condition which can have a profound impact on almost all aspects of a person's life (especially if the condition is unrecognized!): both physical and mental health, all kinds of relationships (with family members, friends, partners, colleagues), career, job performance, your energy levels - how much you're able to accomplish in a day, ability to be financially independent, education level, study results, continuous learning etc. 

 

Lets say NCGS is a real thing(which probably it is). But the problem is there is no way to detect it other than going on gluten free trials, which is not a good way of diagnosis. People could be allergic to different components of wheat. And a lot of time due to  placebo  its difficult to even trust yourself. I dont have any common symptoms of gluten allergy , so it makes diagnosis for NCGS even more difficult. Plus any symptoms can be attributed to gluten intolerance from hairfall to cancer. Gluten intolerance is said to cause some person to go thin and some other people to go fat. 

Going on gluten free diet is a huge life change to make. It is going to impact your whole way of life. you are damned if you do and damnd if you dont. I dont want to go gluten free unless there is some solid proof.

Regarding doctors, nobody has got any clue. If it is celiac , they may advice you to go gluten free. Other than that they have no idea about any of these type of diseases or conditions. 

The whole thing is sad.

[Ennis-TX]

19 minutes ago, water said:

Lets say NCGS is a real thing(which probably it is). But the problem is there is no way to detect it other than going on gluten free trials, which is not a good way of diagnosis. People could be allergic to different components of wheat. And a lot of time due to  placebo  its difficult to even trust yourself. I dont have any common symptoms of gluten allergy , so it makes diagnosis for NCGS even more difficult. Plus any symptoms can be attributed to gluten intolerance from hairfall to cancer. Gluten intolerance is said to cause some person to go thin and some other people to go fat. 

Going on gluten free diet is a huge life change to make. It is going to impact your whole way of life. you are damned if you do and damnd if you dont. I dont want to go gluten free unless there is some solid proof.

Regarding doctors, nobody has got any clue. If it is celiac , they may advice you to go gluten free. Other than that they have no idea about any of these type of diseases or conditions. 

The whole thing is sad.

While it seemed like a huge life style change at first. It really is quite simple, pain is most people are on the SAD (Standard American Diet) and makes changing to a whole foods only diet harder. But changing to food made in house of only 1-5 whole food unprocessed ingredients is quite simple. Using this method of simple meals of unprocessed food, and recording in a food dairy reactions to food and method of cooking greatly simplifies things.

Focus on celiac first, then once you get that ruled out then consider NCGS and just try the gluten free diet and see how you feel. Again keeping a Food dairy might find other culprits, a rotating diet removing food for a few days then reintroducing them a few days later then removing again tend to show your if you have intolerance or slight allergies to foods.

Unsure on the immune suppressant, I know I head some people use them to reduce symptoms of celiac in certain cases where the diet alone does not bring the numbers down (Refractory Celiac). What do you use yours for? Crohns, Ulcerative Colitis? Just thought I would ask as some other members might be able to give you suggestions for alternative medicine and diet to help so you can perhaps get off it for testing. Wondering if perhaps some relation between your current AI disease symptoms with confusion/aggravated symptoms in combination with celiac. I know I had to drop my RX for my  Ulcerative Colitis meds as I could not afford it, instead I learned I could take 2 herbal remedies and a major shift in diet (annoying one) has stopped the issues with it.

[water]

35 minutes ago, Ennis_TX said:

While it seemed like a huge life style change at first. It really is quite simple, pain is most people are on the SAD (Standard American Diet) and makes changing to a whole foods only diet harder. But changing to food made in house of only 1-5 whole food unprocessed ingredients is quite simple. Using this method of simple meals of unprocessed food, and recording in a food dairy reactions to food and method of cooking greatly simplifies things.

Focus on celiac first, then once you get that ruled out then consider NCGS and just try the gluten free diet and see how you feel. Again keeping a Food dairy might find other culprits, a rotating diet removing food for a few days then reintroducing them a few days later then removing again tend to show your if you have intolerance or slight allergies to foods.

Unsure on the immune suppressant, I know I head some people use them to reduce symptoms of celiac in certain cases where the diet alone does not bring the numbers down (Refractory Celiac). What do you use yours for? Crohns, Ulcerative Colitis? Just thought I would ask as some other members might be able to give you suggestions for alternative medicine and diet to help so you can perhaps get off it for testing. Wondering if perhaps some relation between your current AI disease symptoms with confusion/aggravated symptoms in combination with celiac. I know I had to drop my RX for my  Ulcerative Colitis meds as I could not afford it, instead I learned I could take 2 herbal remedies and a major shift in diet (annoying one) has stopped the issues with it.

There are risks associated with stopping meds. Also it  takes time for meds to wean off.

Meds are also know to damage intestine , I dont know how much biopsy is gonna be helpful. 

NCGS is  hard to establish since I dont have classic symptoms of gluten intolerance. And it could be irritation to anything.

Its the slight sensation loss of sensation in hands and feet that has me worried since it could be start of attaxia.

 

[Gluten-free-01]

5 hours ago, water said:

Regarding doctors, nobody has got any clue. If it is celiac , they may advice you to go gluten free. Other than that they have no idea about any of these type of diseases or conditions. 

The whole thing is sad.

Ok, you're fed up with doctors - but you'll have to communicate with them to some extent if you want a formal celiac diagnosis..

Ennis has given you good advice:

4 hours ago, Ennis_TX said:

Focus on celiac first, then once you get that ruled out then consider NCGS and just try the gluten free diet and see how you feel. Again keeping a Food dairy might find other culprits, a rotating diet removing food for a few days then reintroducing them a few days later then removing again tend to show your if you have intolerance or slight allergies to foods.

As for the immunosuppressants - yes, they will probably affect the celiac test results. I'm not a doctor though. You should really ask a specialist.

'Because of the possibility of false-negative results, these tests need to be performed before the initiation of dietary gluten restriction. Many patients initiate a gluten-free diet on their own before a conclusive diagnosis of celiac disease is reached. In severe celiac disease, the effect on serologies and biopsy findings is likely minimal if testing is performed within two months of initiating a gluten-free diet.15 However, the effect depends on the duration of the diet and how strictly the patient follows it. Persons with positive serology results who have a diagnosis of celiac disease on intestinal biopsy typically have normal results six to 12 months after the introduction of a gluten-free diet. Testing results can also be masked when individuals are taking immunosuppressants.6'

Open Original Shared Link

4 hours ago, water said:

Its the slight sensation loss of sensation in hands and feet that has me worried since it could be start of attaxia.

Could also be peripheral neuropathy - a condition often associated with celiac/ncgs. Or a vitamin/mineral deficiency.

Open Original Shared Link

Every nerve in your peripheral system has a specific function, so symptoms depend on the type of nerves affected. Nerves are classified into:

Sensory nerves that receive sensation, such as temperature, pain, vibration or touch, from the skin

Motor nerves that control muscle movement

Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder

Signs and symptoms of peripheral neuropathy might include:

Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms

Sharp, jabbing, throbbing, freezing or burning pain

Extreme sensitivity to touch

Lack of coordination and falling

Muscle weakness or paralysis if motor nerves are affected

Not a single disease, peripheral neuropathy is nerve damage caused by a number of conditions. Causes of neuropathies include:

Vitamin deficiencies. B vitamins — including B-1, B-6 and B-12 — vitamin E and niacin are crucial to nerve health.