I don't want to eat gluten to get tested

[Lynne Marie]

I have a question (well several) and I am so grateful for anyone who can help. 

Firstly, I only began to cut out gluten by accident. To make a long story short, I noticed now if I have any kind of gluten at all I am sick right away. (like within 15-20 minutes)

I know you have to eat gluten to get tested, but I just can't bring myself to do it. The last big accidental glutening was really terrible. I get some bathroom symptoms that are super unpleasant and I just feel horrible. 

I had had a genetic family test thingie to find relatives, and I discovered you can use the results to find out if you have the HLA-DQ2 gene. I looked into because I thought if I could rule celiac disease out, I would feel better about everything and wouldn't have to eat gluten to go to the doctor and find out what is going on in my gut. Well, I found out I do have the HLA-DQ2 gene. I know it's not a diagnosis, but it is a distinct possibility.

I know I need to go to the doctor and get checked out etc, but I just don't want to eat gluten again. I already have an autoimmune disorder and I feel like I have just been through enough with doctors. The worst is the gluten eating part though: I do not want to go back to feeling like I did when eating gluten.  Not even for one day, because it takes a toll that lasts so long. I feel like it is almost as bad as not knowing. 

I have other questions too, but maybe those are for another day...

Thanks for any advice!

[Lynne Marie]

20 minutes ago, Lynne Marie said:

I have a question (well several) and I am so grateful for anyone who can help. 

Firstly, I only began to cut out gluten by accident. To make a long story short, I noticed now if I have any kind of gluten at all I am sick right away. (like within 15-20 minutes)

I know you have to eat gluten to get tested, but I just can't bring myself to do it. The last big accidental glutening was really terrible. I get some bathroom symptoms that are super unpleasant and I just feel horrible. 

I had had a genetic family test thingie to find relatives, and I discovered you can use the results to find out if you have the HLA-DQ2 gene. I looked into because I thought if I could rule celiac disease out, I would feel better about everything and wouldn't have to eat gluten to go to the doctor and find out what is going on in my gut. Well, I found out I do have the HLA-DQ2 gene. I know it's not a diagnosis, but it is a distinct possibility.

I know I need to go to the doctor and get checked out etc, but I just don't want to eat gluten again. I already have an autoimmune disorder and I feel like I have just been through enough with doctors. The worst is the gluten eating part though: I do not want to go back to feeling like I did when eating gluten.  Not even for one day, because it takes a toll that lasts so long. I feel like it is almost as bad as not knowing. 

I have other questions too, but maybe those are for another day...

Thanks for any advice!

I wanted to add: I think I could live without a true diagnosis one way or the other and be perfectly happy to just not eat gluten end of story. But sadly after 6 months of being gluten free (which were really great months, no more toilet issues, no more being completely exhausted from meals, sometimes even during a meal, no more gas and pain and huge tummy... I have been a normal person, with normal bathroom time for the first time since I can remember) things have changed again. I keep feeling like I have been low key exposed to gluten but I can't find the source... I am super super strict, I don't see where it could be coming from.  It get a tiny bit worse week to week, like I am taking steps back to where I was before (still far from that, but enough to worry me)

I feel like I should be finding out what is REALLY going on and not just guessing (maybe a food allergy or intolerance? IBS? SIB? Emotional issues?) I think I would be good to get a real diagnosis and nut just muddy the waters. But maybe I am just overthinking things...

[trents]

Welcome to the forum, Lynne Marie! In your first post you indicated you had a question but you never actually stated what it was. What is your question?

So, you have the genetic potential for celiac disease and you have classic symptoms. I would assume you have celiac disease as opposed to NCGS (Non Celiac Gluten Sensitivity). However, since returning to a diet with gluten doesn't seem to be on your radar you would need to live with uncertainty in regard to which it is. In the end, the antidote is the same for both, lifelong abstinence from gluten.

Concerning the content of your second post, my guess would be you have developed additional food sensitivities in addition to gluten or have developed another autoimmune disorder. Your last sentence suggests you are aware this is common in the celiac population. I would also suggest you look into MCAS (Mast Cell Activation Syndrome) and histamine intolerance.

[patty-maguire]

1 hour ago, Lynne Marie said:

I have a question (well several) and I am so grateful for anyone who can help. 

Firstly, I only began to cut out gluten by accident. To make a long story short, I noticed now if I have any kind of gluten at all I am sick right away. (like within 15-20 minutes)

I know you have to eat gluten to get tested, but I just can't bring myself to do it. The last big accidental glutening was really terrible. I get some bathroom symptoms that are super unpleasant and I just feel horrible. 

I had had a genetic family test thingie to find relatives, and I discovered you can use the results to find out if you have the HLA-DQ2 gene. I looked into because I thought if I could rule celiac disease out, I would feel better about everything and wouldn't have to eat gluten to go to the doctor and find out what is going on in my gut. Well, I found out I do have the HLA-DQ2 gene. I know it's not a diagnosis, but it is a distinct possibility.

I know I need to go to the doctor and get checked out etc, but I just don't want to eat gluten again. I already have an autoimmune disorder and I feel like I have just been through enough with doctors. The worst is the gluten eating part though: I do not want to go back to feeling like I did when eating gluten.  Not even for one day, because it takes a toll that lasts so long. I feel like it is almost as bad as not knowing. 

I have other questions too, but maybe those are for another day...

Thanks for any advice!

I didn’t see a question.  Are you looking for confirmation that you could have celiac?  Advice on what to do?

My suggestion, if you really don’t want to do the gluten challenge and you know gluten affects you and you have the gene, just assume you have it and carry on as though you do. You’re right that’s it’s not a formal diagnosis but you don’t need that to follow a gluten-free diet.

There are some pros to getting diagnosed:

- you’ll be less likely to second guess yourself and cheat

- you’ll get less pushback from friends and relatives questioning whether it’s a real thing and encouraging you to cheat

- depending on where you live, there may be benefits to a celiac diagnosis such as tax breaks, assistance with buying gluten-free food etc.

- celiac disease requires some follow up monitoring which might be difficult to get your doctor to do if you don’t have a diagnosis. 
 

At the end of the day, it’s up to you whether it’s worth it or not. 
 

All the best. 

[Lynne Marie]

1 minute ago, trents said:

Welcome to the forum, Lynne Marie! In your first post you indicated you had a question but you never actually stated what it was. What is your question?

So, you have the genetic potential for celiac disease and you have classic symptoms. I would assume you have celiac disease as opposed to NCGS (Non Celiac Gluten Sensitivity). However, since returning to a diet with gluten doesn't seem to be on your radar you would need to live with uncertainty in regard to which it is. In the end, the antidote is the same for both, lifelong abstinence from gluten.

Concerning the content of your second post, my guess would be you have developed additional food sensitivities in addition to gluten or have developed another autoimmune disorder. Your last sentence suggests you are aware this is common in the celiac population. I would also suggest you look into MCAS (Mast Cell Activation Syndrome) and histamine intolerance.

Thanks Trent! 

You are right, I didn't really ask a question 😂

I thought about it for a moment, and I think my post is a mixture of self pity (because I want to get tests done but I don't want to eat gluten - which is not helpful) and hope (that maybe someone will tell me there is a great solution to this quandary -there probably isn't) 

I can see now that this isn't really the best use of resources and getting to a solution.

I think, if I could reframe my question I would ask: What would YOU do? I just don't know how important it is to find out what's going on vs. eating gluten. 

About the MCAS (Mast Cell Activation Syndrome) and histamine intolerance: oh my goodness! I think you might be onto something... 😳 It all sounds a bit familiar and currently very relevant. Thank you!

 

[Lynne Marie]

2 minutes ago, patty_maguire said:

I didn’t see a question.  Are you looking for confirmation that you could have celiac?  Advice on what to do?

My suggestion, if you really don’t want to do the gluten challenge and you know gluten affects you and you have the gene, just assume you have it and carry on as though you do. You’re right that’s it’s not a formal diagnosis but you don’t need that to follow a gluten-free diet.

There are some pros to getting diagnosed:

- you’ll be less likely to second guess yourself and cheat

- you’ll get less pushback from friends and relatives questioning whether it’s a real thing and encouraging you to cheat

- depending on where you live, there may be benefits to a celiac diagnosis such as tax breaks, assistance with buying gluten-free food etc.

- celiac disease requires some follow up monitoring which might be difficult to get your doctor to do if you don’t have a diagnosis. 
 

At the end of the day, it’s up to you whether it’s worth it or not. 
 

All the best. 

thanks for your answer!

You are right, I didn't ask a question, and it's a little embarrassing to be honest. I think I was throwing myself a pity party. 

The pros and the cons are a good list (although I am not really tempted to cheat because the results of eating gluten are not very tempting, lol) But knowing for sure would be nice. 
I think the best idea is to just finally talk to my doctor, present my personal findings, ask questions and see what he / she thinks we should do. I do not have much confidence (I've had negative experiences with medical issues in the past and lots of lacklustre care regarding a diagnosis I have (psoriasis and psoriasis arthritis) but it's probably just the route I have to go. 

Thanks so much for taking the time to answer my non-question, both replies have genuinely helped me to find some clarity. 🌻

[GfreeOH]

Hello! 
 

I want to start by saying I’m not formally diagnosed yet ( I’m still in the process), but, like you I do MUCH better on a gluten free diet. I put of the EGD for so long due to not wanting to do the gluten challenge. I explained to the Gastro that gluten makes me so unwell, and I was worried because quite honestly, they would not be there for me when symptoms got really bad during the challenge. If removing gluten is the only way to ease symptoms, there would be nothing they could do when I’m in dire pain a week or two into the challenge. For me, I get severe distended abdomen (looking 8 months pregnant), trapped gas that has at times been so severe I went to the ER thinking it was appendicitis, I get terrible brain fog/lose my words, I stop being able to have a bowel movement easily so that certainly doesn’t help with pain, and I get super anxious and swear to my family that something is seriously wrong with me because no one should be in such discomfort. The Gastro originally said I had NCGS, and said that if I wanted to know for sure if I had Celiac I needed to do the EGD. She sent off bloodwork to Mayo Clinic and found out I had the Celiac Gene pairs. My father does as well and does NOT have active celiac. We did the EGD and it was positive for Villous flattening, suggestive of celiac. We are now awaiting the celiac serology to confirm. This is backwards because they really should have done serology first:( I say all this to tell you that I made the decision to tough out the gluten challenge because I have kids and wanted to know if I needed to have them screened at a later date. I also had problems with not being strict about cross contamination because if I only had NCGS I knew it wouldn’t or shouldn’t cause intestinal damage. With NCGS I’d only have to deal with the distress it caused my physically rather than worrying about the risks of the damage potentially leading to something more serious such as cancer. So, pushing through the gluten challenge to have the EGD was important to me and, I did make it through. There were many times through it I was very unwell, and I’m still not recovered from the challenge, but I’m glad I did it. I can now know with certainty that gluten is causing damage, and, it’s a huge motivator to ensure I am strict about cross contamination moving forward. It’s really a personal decision only you can make at this point. You don’t NEED anyone to tell you to remove gluten to feel better, but, if you want to have some further clarity or re-assurance I’d try to push through the gluten challenge. My one caviat to agreeing to the EGD was making sure this time they took more than one biopsy from the duodenum since Celiac is patchy. I had a scope done many years ago when I lost weight rapidly (down to weighing 90 lbs.) and had diarreah for 9 weeks straight and they only took one biopsy then. I’ve questioned the procedure results every day since reading that they should take 4-6 for accurate diagnosis. Thankfully the scope I had done a few weeks ago was with a new Gastro who took an adequate amount of samples:)
 

I commented because the doctors for years have told me my issues were food allergies, and “JUST IBS”. In my heart, I just knew that this was so much more than that. You don’t get my level of daily discomfort, vitamin deficiency, iron deficiency, gas/bloating, and a host of other issues from “just allergies/IBS”. So, my vote would be go for the full work-up. It would be worth it if only to rule-in, or rule-out the possibility:)

[Lynne Marie]

17 minutes ago, GfreeOH said:

Hello! 
 

I want to start by saying I’m not formally diagnosed yet ( I’m still in the process), but, like you I do MUCH better on a gluten free diet. I put of the EGD for so long due to not wanting to do the gluten challenge. I explained to the Gastro that gluten makes me so unwell, and I was worried because quite honestly, they would not be there for me when symptoms got really bad during the challenge. If removing gluten is the only way to ease symptoms, there would be nothing they could do when I’m in dire pain a week or two into the challenge. For me, I get severe distended abdomen (looking 8 months pregnant), trapped gas that has at times been so severe I went to the ER thinking it was appendicitis, I get terrible brain fog/lose my words, I stop being able to have a bowel movement easily so that certainly doesn’t help with pain, and I get super anxious and swear to my family that something is seriously wrong with me because no one should be in such discomfort. The Gastro originally said I had NCGS, and said that if I wanted to know for sure if I had Celiac I needed to do the EGD. She sent off bloodwork to Mayo Clinic and found out I had the Celiac Gene pairs. My father does as well and does NOT have active celiac. We did the EGD and it was positive for Villous flattening, suggestive of celiac. We are now awaiting the celiac serology to confirm. This is backwards because they really should have done serology first:( I say all this to tell you that I made the decision to tough out the gluten challenge because I have kids and wanted to know if I needed to have them screened at a later date. I also had problems with not being strict about cross contamination because if I only had NCGS I knew it wouldn’t or shouldn’t cause intestinal damage. With NCGS I’d only have to deal with the distress it caused my physically rather than worrying about the risks of the damage potentially leading to something more serious such as cancer. So, pushing through the gluten challenge to have the EGD was important to me and, I did make it through. There were many times through it I was very unwell, and I’m still not recovered from the challenge, but I’m glad I did it. I can now know with certainty that gluten is causing damage, and, it’s a huge motivator to ensure I am strict about cross contamination moving forward. It’s really a personal decision only you can make at this point. You don’t NEED anyone to tell you to remove gluten to feel better, but, if you want to have some further clarity or re-assurance I’d try to push through the gluten challenge. My one caviat to agreeing to the EGD was making sure this time they took more than one biopsy from the duodenum since Celiac is patchy. I had a scope done many years ago when I lost weight rapidly (down to weighing 90 lbs.) and had diarreah for 9 weeks straight and they only took one biopsy then. I’ve questioned the procedure results every day since reading that they should take 4-6 for accurate diagnosis. Thankfully the scope I had done a few weeks ago was with a new Gastro who took an adequate amount of samples:)
 

I commented because the doctors for years have told me my issues were food allergies, and “JUST IBS”. In my heart, I just knew that this was so much more than that. You don’t get my level of daily discomfort, vitamin deficiency, iron deficiency, gas/bloating, and a host of other issues from “just allergies/IBS”. So, my vote would be go for the full work-up. It would be worth it if only to rule-in, or rule-out the possibility:)

Oh my gosh! That all makes sense. I am super impressed that you pushed through on the challenge. But it sounds like it was worth it for you. I guess I am going to have to make the same kind of decision. 

May I ask how long you ate gluten for in advance of the EGD?  How long did it take you, personally, to recover after going back to gluten free?

[GfreeOH]

3 hours ago, Lynne Marie said:

Oh my gosh! That all makes sense. I am super impressed that you pushed through on the challenge. But it sounds like it was worth it for you. I guess I am going to have to make the same kind of decision. 

May I ask how long you ate gluten for in advance of the EGD?  How long did it take you, personally, to recover after going back to gluten free?

Hello!

I ate gluten for 8-9 weeks prior to the EGD. I was gluten free for maybe 6 months prior to that challenge. I am not back to gluten free yet due to them running celiac serology after the EGD. My TTG-IGA and IGG just came back negative - so I am lost at the moment. I will have to wait for the Gastro to call Monday as my TTG results just posted to the portal. This has definitely been a long frustrating journey for me. 

I hope you get your answers one way or the other:) If you feel better eating gluten free - I would just make sure you have all the testing done you wish to pursue before you continue with the diet.

 

GOOD LUCK:)

[trents]

GfreeOH, do you know exactly what serum antibody tests were run? Often, doctors will only run the tTG-IGA. That will miss 20% of people who are confirmed to have celiac disease by biopsy. It is much better to run a "full" celiac panel that is comprised of several different antibody tests. What one misses, another may catch.

[GfreeOH]

1 minute ago, trents said:

GfreeOH, do you know exactly what serum antibody tests were run? Often, doctors will only run the tTG-IGA. That will miss 20% of people who are confirmed to have celiac disease by biopsy. It is much better to run a "full" celiac panel that is comprised of several different antibody tests. What one misses, another may catch.

Thanks Trents. I posted a response on my original post maybe 10 minutes ago as my results just posted. They only ran TTG-IGA and IGG, unfortunately. I called to confirm prior that they were running a “full panel” and they said yes. Clearly, it was not a full panel:( I will see what they say when I touch base Monday. Would be really unfortunate that I have to get re-drawn to have the other tests when I feel like the Villous atrophy on the EGD, and the HLADQ 2.5 positivity should be enough. I think at this stage I will go back to gluten free, and see what they say when they call me next week with results (I will likely have to call THEM as the practice just is not that on top of anything).

[trents]

GfreeOH, the presence of villous atrophy is the gold standard for diagnosing celiac disease. I would not bother with any more testing and just begin focusing on achieving the gluten-free lifestyle.

[GfreeOH]

3 minutes ago, trents said:

GfreeOH, the presence of villous atrophy is the gold standard for diagnosing celiac disease. I would not bother with any more testing and just begin focusing on achieving the gluten-free lifestyle.

Thank-you. I am taking you and Scott’s advice and just going full-steam ahead with the addition of gluten free. I am already dairy and nut-free, so I can certainly adapt. 

Have a good evening!

[trents]

I don't do nuts well anymore either. With celaic disease, you can expect to develop other food sensitivities/intolerances because of the leaky gut that goes along with celiac disease. Larger than normal protein fractions from various foods leak through the gut lining into the blood stream where they can be interpreted as invaders by the immune system.

But perhaps this will help you to get off on the right foot as far as gluten free eating/lifestyle:

 

[GfreeOH]

39 minutes ago, trents said:

I don't do nuts well anymore either. With celaic disease, you can expect to develop other food sensitivities/intolerances because of the leaky gut that goes along with celiac disease. Larger than normal protein fractions from various foods leak through the gut lining into the blood stream where they can be interpreted as invaders by the immune system.

But perhaps this will help you to get off on the right foot as far as gluten free eating/lifestyle:

 

Makes sense about Leaky Gut causing other intolerances. I haven’t been able to do dairy/nuts for many years. Pea is my other high allergen, so it makes having non-dairy substitutes a little more tricky as a lot of them contain pea protein from what I’ve read. Gluten free won’t be a huge stretch for me - I will just need to tighten up on cross-contamination risk for sure. I will do some reading through this Beginners Guide. Thanks for attaching!!

[trents]

Dairy sensitivity/intolerance can be due to either lactose intolerance or casein intolerance. Casein is the main protein in dairy while lactose is the sugar component. A lot of people assume the problem is lactose intolerance when it may actually be casein intolerance. There is another protein found in dairy called whey and it is a very high quality, complete protein. I'm not aware of anyone having an allergy/intolerance/sensitivity to whey. You can get it in bulk at Costco for a reasonable price. I mention this in case you have concerns about getting enough protein because you can't do dairy.

[Wheatwacked]

When you give up gluten you give up some vitamins and minerals that are added to fortify our diets. Some like choline we already are low in because we're educated that a healthy diet limits eggs, liver and beef, the major dietary sources. To reach the RDA one needs to eat a minimum of 4 large eggs a day. Or one can eat 10 cups of cooked brocolli. But many during the recovery stage can't eat enough of the vitamins and minerals. Think of them as food in a pill. They are not supplements, they are essentials. Stingling Nettle is a supplement, vitamin D is an essential

Choline is essential for nerve and brain functions (acetylcholine), cell membranes (phosphotidylcholine), an essential salt in bile for fat digestion (yellow stools), breaks down homocysteine, the toxic waste of protein metabolism that is linked to vasular disease.

These have helped me most taking them together. I suggest add them one at a time space a week apart so you can guage your response. This helped me energy-wise, brain fog, well-being, loosing belly fat and improving muscle tone. It's a shame you can't buy them as a single pill.  All the B vitamins have no limit, more is better. Vitamin D has been shown safe even at 20,000 IU for months and is easily checked with a blood test. The minimum RDA for iodine is 125 mc a day and the safe upper limit is 1100 mcg (1 mg). Nori is an organic iodine, not elemental.

• 10,000 IU D3 - bone, mental health, autoimmune health
• 500 mg Thiamine HCL ( vitamin B1) - glucose transport, neurapathies
• 500 mg Nicotinic Acid (B3) - the flush and itching are not considered a health risk and passes in a few days. - increases blood flow through tissue
• 500 mg Pantothenic Acid (B5) - final step to create ATP cellular energy
• 1 mg (1000 mcg) B12 - red blood cells
• 840 mg Phosotidylcholine or 500 mg choline - cell structure, nerve transmission
• 1 or more 2.5 gm sheets of certified organic Nori. each sheet is 42 mcg of iodine - protects from breast cancer, muscle tone, hair loss.

20 hours ago, Lynne Marie said:

But sadly after 6 months of being gluten free (which were really great months, no more toilet issues, no more being completely exhausted from meals, sometimes even during a meal, no more gas and pain and huge tummy... I have been a normal person, with normal bathroom time for the first time since I can remember) things have changed again. I keep feeling like I have been low key exposed to gluten but I can't find the source...

This might help. Table 1 Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

[Lynne Marie]

1 minute ago, Wheatwacked said:

When you give up gluten you give up some vitamins and minerals that are added to fortify our diets. Some like choline we already are low in because we're educated that a healthy diet limits eggs, liver and beef, the major dietary sources. To reach the RDA one needs to eat a minimum of 4 large eggs a day. Or one can eat 10 cups of cooked brocolli. But many during the recovery stage can't eat enough of the vitamins and minerals. Think of them as food in a pill. They are not supplements, they are essentials. Stingling Nettle is a supplement, vitamin D is an essential

Choline is essential for nerve and brain functions (acetylcholine), cell membranes (phosphotidylcholine), an essential salt in bile for fat digestion (yellow stools), breaks down homocysteine, the toxic waste of protein metabolism that is linked to vasular disease.

These have helped me most taking them together. I suggest add them one at a time space a week apart so you can guage your response. This helped me energy-wise, brain fog, well-being, loosing belly fat and improving muscle tone. It's a shame you can't buy them as a single pill.  All the B vitamins have no limit, more is better. Vitamin D has been shown safe even at 20,000 IU for months and is easily checked with a blood test. The minimum RDA for iodine is 125 mc a day and the safe upper limit is 1100 mcg (1 mg). Nori is an organic iodine, not elemental.

• 10,000 IU D3 - bone, mental health, autoimmune health
• 500 mg Thiamine HCL ( vitamin B1) - glucose transport, neurapathies
• 500 mg Nicotinic Acid (B3) - the flush and itching are not considered a health risk and passes in a few days. - increases blood flow through tissue
• 500 mg Pantothenic Acid (B5) - final step to create ATP cellular energy
• 1 mg (1000 mcg) B12 - red blood cells
• 840 mg Phosotidylcholine or 500 mg choline - cell structure, nerve transmission
• 1 or more 2.5 gm sheets of certified organic Nori. each sheet is 42 mcg of iodine - protects from breast cancer, muscle tone, hair loss.

This might help. Table 1 Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

Thank you so much for your answer, especially the stuff about cross contamination. I am super frustrated, because at first when I accidentally gave up gluten I noticed I was getting more and more sensitive to gluten, the longer I went gluten free. This happened quite quickly. (I read somewhere that when your gut starts to recover your autoimmune reaction to gluten gets stronger and faster because it isn't "worn out" from the constant battle ... I guess?? Can anybody confirm?!? ) So I got stricter and stricter and I had a few really great months of excellent gut health with very little mistakes. But since about a month (I am at about month 6/7) I just feel like I am being very slightly glutened all the time no matter how careful I am . Of course my family is zero help (sometimes I feel like I am in gluten-hell. Everybody here is very much into bread and noodles. I live abroad and bread and noodles are holy here, hahahah) After reading the article from Trents and your list, I am now no longer surprised I am still having symptoms 😟 It makes me so sad, I am not sure I can make my kitchen/home truly gluten proof. How does everybody do it!?!?

[trents]

33 minutes ago, Lynne Marie said:

Thank you so much for your answer, especially the stuff about cross contamination. I am super frustrated, because at first when I accidentally gave up gluten I noticed I was getting more and more sensitive to gluten, the longer I went gluten free. This happened quite quickly. (I read somewhere that when your gut starts to recover your autoimmune reaction to gluten gets stronger and faster because it isn't "worn out" from the constant battle ... I guess?? Can anybody confirm?!? ) So I got stricter and stricter and I had a few really great months of excellent gut health with very little mistakes. But since about a month (I am at about month 6/7) I just feel like I am being very slightly glutened all the time no matter how careful I am . Of course my family is zero help (sometimes I feel like I am in gluten-hell. Everybody here is very much into bread and noodles. I live abroad and bread and noodles are holy here, hahahah) After reading the article from Trents and your list, I am now no longer surprised I am still having symptoms 😟 It makes me so sad, I am not sure I can make my kitchen/home truly gluten proof. How does everybody do it!?!?

Yes, when we do go off gluten we do become more sensitive to it. We begin to lose whatever tolerance to it we had developed from making our bodies try to cope with it. Your experience of seeming to regress in how you feel is most common. We hear it all the time on the forum. It's probably a combination of things: 1. Still getting some gluten through CC (Cross Contamination), 2. The development of other food intolerances/sensitivities, and 3. Nutritional deficiencies that need to be addressed through supplementation. It typically takes around 2 years for complete rebound of the SB villi once going truly gluten-free. Choose vitamin and mineral supplements carefully. Make sure they are gluten-free. Wheat starch can be used as a filler in pills. Costco is a good source of gluten-free vitamins and supplements with their Nature Made line and the Kirkland signature line. Not all of them will necessarily be gluten free but they will state so clearly on the bottle if they are.

Lynne Marie, do you live in a household with other people who are still consuming gluten?

The social impact of needing to eat gluten-free is probably the most difficult aspect of celiac disease/NCGS. Later on, I'll link an article that underscores that.

Edited January 29, 2023 by trents

[GfreeOH]

13 hours ago, trents said:

Dairy sensitivity/intolerance can be due to either lactose intolerance or casein intolerance. Casein is the main protein in dairy while lactose is the sugar component. A lot of people assume the problem is lactose intolerance when it may actually be casein intolerance. There is another protein found in dairy called whey and it is a very high quality, complete protein. I'm not aware of anyone having an allergy/intolerance/sensitivity to whey. You can get it in bulk at Costco for a reasonable price. I mention this in case you have concerns about getting enough protein because you can't do dairy.

Thanks again Trents. For me, I cannot handle Lactaid, or dairy-free creamers - so, I have always assumed mine was an intolerance to Casein. I gave it all up after a dish of Alfredo sent me to the ER once. I did not realize the bit about Whey. I have always avoided that ingredient as well, maybe unnecessarily! I assumed I couldn’t do most protein drinks due to whey protein so I had never even tested it out. I will also have to look into this supplementation:)

[Lynne Marie]

30 minutes ago, trents said:

Yes, when we do go off gluten we do become more sensitive to it. We begin to lose whatever tolerance to it we had developed from making our bodies try to cope with it. Your experience of seeming to regress in how you feel is most common. We hear it all the time on the forum. It's probably a combination of things: 1. Still getting some gluten through CC (Cross Contamination), 2. The development of other food intolerances/sensitivities, and 3. Nutritional deficiencies that need to be addressed through supplementation. It typically takes around 2 years for complete rebound of the SB villi once going truly gluten-free. Choose vitamin and mineral supplements carefully. Make sure they are gluten-free. Wheat starch can be used as a filler in pills. Costco is a good source of gluten-free vitamins and supplements with their Nature Made line and the Kirkland signature line. Not all of them will necessarily be gluten free but they will state so clearly on the bottle if they are.

Lynne Marie, do you live in a household with other people who are still consuming gluten?

The social impact of needing to eat gluten-free is probably the most difficult aspect of celiac disease/NCGS. Later on, I'll link an article that underscores that.

Trents, I would love to have a link to that article!!!

I am struggling with my family. They are supportive in the sense that they understand what's going on, but they are not on board with making any inconvenient changes (food-wise) sadly. I get it: gluten-free food usually isn't as yummy as food containing gluten! It's also expensive. I think, if I didn't get sick from it, I might not be on board with it either. I have tried to impress onto my husband that it isn't just getting sick now, there are long term consequences.. but I maybe it is too much of an ask. 
About the vitamins: I am in Europe, so no Costcos, but I will look into which ones I buy. I am supposed to be taking Vitamin D anyway (I have had a psoriasis + psoriasis arthritis diagnosis since I was in my thirties so vitamin D was always part of treatment... ) I think calcium too. I have been anaemic since forever but I haven't gotten tested for a while, but probably iron needs to be addressed. Honestly, at the moment I am a little overwhelmed. I have a lot of reading up here to do 😬

[trents]

3 minutes ago, Lynne Marie said:

Trents, I would love to have a link to that article!!!

I am struggling with my family. They are supportive in the sense that they understand what's going on, but they are not on board with making any inconvenient changes (food-wise) sadly. I get it: gluten-free food usually isn't as yummy as food containing gluten! It's also expensive. I think, if I didn't get sick from it, I might not be on board with it either. I have tried to impress onto my husband that it isn't just getting sick now, there are long term consequences.. but I maybe it is too much of an ask. 
About the vitamins: I am in Europe, so no Costcos, but I will look into which ones I buy. I am supposed to be taking Vitamin D anyway (I have had a psoriasis + psoriasis arthritis diagnosis since I was in my thirties so vitamin D was always part of treatment... ) I think calcium too. I have been anaemic since forever but I haven't gotten tested for a while, but probably iron needs to be addressed. Honestly, at the moment I am a little overwhelmed. I have a lot of reading up here to do 😬

Unfortunately, when living in a household where others are still consuming gluten there is a much greater chance of CC. Extra precautions need to be taken to prevent it from happening. Separate toasters, strict attention to dish washing, shared measuring cups and spoons, etc.

The other thing you should be aware of is that a couple of large recent studies indicate that almost 50% of the first degree relatives of those with active celiac disease will have or will develop active celiac disease themselves. First degree relatives would be parents, siblings and offspring and a high percentage of those will be asymptomatic ("silent" celiacs) because they are in the early stages. So, what I am saying is that your first degree relatives should be tested and ideally, tested regularly since celiac disease can develop at any stage of life. If it should happen that someone else in your household were to test positive, then it might help facilitate the movement toward a gluten-free household. Just something to think about. Here is a link to the most recent first degree relative study.

 

[Lynne Marie]

5 hours ago, trents said:

Unfortunately, when living in a household where others are still consuming gluten there is a much greater chance of CC. Extra precautions need to be taken to prevent it from happening. Separate toasters, strict attention to dish washing, shared measuring cups and spoons, etc.

The other thing you should be aware of is that a couple of large recent studies indicate that almost 50% of the first degree relatives of those with active celiac disease will have or will develop active celiac disease themselves. First degree relatives would be parents, siblings and offspring and a high percentage of those will be asymptomatic ("silent" celiacs) because they are in the early stages. So, what I am saying is that your first degree relatives should be tested and ideally, tested regularly since celiac disease can develop at any stage of life. If it should happen that someone else in your household were to test positive, then it might help facilitate the movement toward a gluten-free household. Just something to think about. Here is a link to the most recent first degree relative study.

 

thanks for that! 

[Russ H]

20 hours ago, trents said:

The other thing you should be aware of is that a couple of large recent studies indicate that almost 50% of the first degree relatives of those with active celiac disease will have or will develop active celiac disease themselves. First degree relatives would be parents, siblings and offspring and a high percentage of those will be asymptomatic ("silent" celiacs) because they are in the early stages. So, what I am saying is that your first degree relatives should be tested and ideally, tested regularly since celiac disease can develop at any stage of life.

 

The risk for 1st degree relatives (who share half of each other's genes) is about 10 %. Identical twins is about 70%.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/causes/genetics/

[Wheatwacked]

Since the publication of the guideline in 2013

And that was the belief in 1976 when my son was diagnosed. More recently the Mayo Clinic has upgraded that to 47% of first degree relatives.