Gluten Intolerance , Possible Autoimmunity & Pain

[MarieH33]

Hi, I am new to this site.  I do not have Celiac disease. I had a biopsy of my intestine during a Colonoscopy in 2009, it was negative for Celiac. (I was not being checked for Celiac at the time, My Gastro said he does Celiac biopsies when doing a Colonoscopy, so that's how I found out).   I suffer with IBS since 1980, and now Neuropathic pain since 2011.  Docs (Neurologists) are calling it Idiopathic small fiber neuropathy.  I had millions of tests, blood work and diagnostic tests. There is no prove of any Autoimmunity. I believe there is an Autoimmune component to this condition (disease).  I am thinking about trying gluten -free to see if it helps with this horrific pain.  I have cut out all sugar and most diary. I eat plenty of green vegetables and some fruit. Mostly berries, kiwi , pears and apples.   I have come to this site out of desperation. I do not know where to start. I am already 'underweight" , so I can not afford to lose any more weight.  I am hoping someone can guide me in the right direction on how to start a gluten free diet, in case I truly am gluten-insensitive.  Has anyone else had the same experience? 

 

 

[GFinDC]

Welcome to the forum MarieH33! 

You can find some tips on getting started on the gluten-free diet in the Newbie 101 thread in the "Coping with" forum section.  But the basics are, eat only whole foods for 6 months, no restaurants, no dairy, avoid excess sugar and carbs (starchy foods).  Eat meats, veggies, nuts, eggs, some fruit.  Fruit has a lot of sugar so don't overdo it.

Has the doctor tested you for nutrient deficiencies?  People with celiac often have malabsorption issues and are sometimes low on some vitamins and minerals.  That could explain your nerve issues.

There is another condition called NCGS (non-celiac gluten sensitivity), which is more common than celiac disease.  But NCGS does not cause gut damage and malabsorption.  There aren't any good tests for NCGS yet.

 

[tessa25]

I could be totally wrong here, but I didn't think a colonoscopy could be used to detect celiac. Wrong end. I'd get the full celiac blood tests done, TTG IGA and IGG, DGP IGA and IGG, EMA, (I think I got them all). This would be before going gluten free. Then if one test is positive go for the endoscopy, then go gluten free.

 

[icelandgirl]

Tessa is right...an endoscopy is used to diagnose celiac.  Even if you had that in 2009, a lot can change in 8 years.  You could have developed it since.  The best place to start is getting a full celiac panel done, as Tessa listed above.  Keep eating gluten until the testing is complete.  You don't need a lot, a slice or 2 of bread a day or the equivalent. 

Good luck to you...please let us know how it goes!

[cyclinglady]

Although, it is possible to access the small intestine via a colonoscopy, it is not common.  I agree that a current celiac blood test and possibly an endoscopy is in order.   You can develop celiac disease at any time in your life.  Perhaps, it was just beginning all those years ago.  Maybe there was no damage in the spot your old GI biopsies.    If everything is normal, then feel free to try the gluten-free diet.  

Here is more information about testing from a reputable source.  

Open Original Shared Link

In the meantime add more dense foods into your diet, like fish, meats, fats (olive oil, avocado, etc.) to help you add on weight.  

Hang in there!  

 

[Ennis-TX]

Yes you should get a follow up test, the nerve issues with celiac can normally be made worse by malabsorption of nutrients really need to get tested for that and see about talking to a dietician about your diet and perhaps supplementation on it. I would like the other said suggest getting the full celiac blood test done and  a follow up endoscope with biopsy to check for celiac disease.

Common issues that could make the nerve issues worse are nutrient absorption issues with, b-vitamins, iron, and magnesium. Even after going gluten-free I had to start taking supplements to make up for my system not being able to absorb them in the right amounts and still to this day have to take them in some degree.

As for putting on weight I found protein powders high in zinc, and iron like Pumpkin seed protein or hemp protein help with recovery and rebuilding the body, I take 2 tsp of it before bed with either BCAA pills (prevents muscle breakdown)  or with a scoop of protein powder to help my body recover and build while I sleep. I also sip on a protein shake throughout the day with vegan protein powder like Nutra-Key V-Pro or MRM Veggie elite blended with almond butter and almond milk or coconut yogurt to help keep weight on. Also I find snacking on nuts and seeds throughout the day helps a lot, and I always have avocado or a nut butter with meals. Try to balance your meals with a little bit of everything to get all the nutrients you need. IE, Leafy Greens, Squash/Peppers/Tomatoes, Nuts/seeds, Fruit, Meat/Eggs/Fish, and a carb if you eat them (I do not eat carbs)Rice/Quinoa/Beans      I have a post with places to buy nutrients and foods at good pricing if you have issues finding something.

[MarieH33]

Hello and Thank you all for your very kind , informative and quick responses.  I should have added that I had all of the blood-work that Tessa and the rest of you suggested.  Four Neurologist, Rheumy tested me. They did the  "Celiac panel" and many other blood tests including  IGG,  IgA,  (antibodies) etc. to check for Celiac or any other abnormalities.  I had all the vitamin blood tests,  B 12, B 1, B 6, Mag, Iron, and so many other blood tests.  Everything comes back normal.  No Thyroid issues.  I had these tests done a few times since 2011. My last panel was Dec 2016. I was hoping for something to come back abnormal so I could "treat" it and get better.  This is why the Doctors have "given up" on me  . I am on my own, trying to find an answer to why I get neuropathic pain.  The Doctors are adamant that I do not have Celiac disease. I dont think they really know or care enough to suggest going gluten-free as a trial to see if it helps. If not the neuropathy , maybe it could help with my  C-IBS (bloating and pain)

 Ennis, I  try to balance my meals with a little bit of everything to get all the nutrients I need. IE, Leafy Greens, Squash/Peppers/Tomatoes, Nuts/seeds, Fruit, Meat/Eggs/Fish, and some carbs such as Rice/Quinoa/Beans. What are  Pumpkin seed protein and hemp protein? Where can I buy them?  

What is  this condition called NCGS (non-celiac gluten sensitivity), which is more common than celiac disease? Does it mean I could be gluten sensitive without having Celiac disease?   I am willing to try and find out. (Today is day 3 that I have elimanted gluten).  I hope I do not get more intestinal issues from my body missing gluten. Sigh.. However,  I get the sense from some of the responses that if none of my blood-work is abnormal (with exception of the endoscope), then it doesn't make sense to try gluten free.? please help. Ty Marie

 

   

 

[Ennis-TX]

Open Original Shared Link

Is a partial defatted protein powder based on pumpkin seeds, (and one of the few things that help me put on weight). You can add a bit to everything good source of many trace minerals and a great amino acid complex. As for hemp seed protein it is a pain getting gluten-free now days. The hemp market took off and farmers grow it on rotation with wheat often and use shared equipment. Best and last two sources I have found are from Jarrow Formulas brand you can find on amazon, and Gerbs Allergen Friendly foods makes a ground hemp meal that works pretty good.  I use LuckyVitamin for most of my protein powders, and price check against amazon.

Note, I eat like a body builder a mostly ketogenic diet myself, my aver meals consist of 2-3 scoops of  protein powders or 8-10 egg whites, 2-5 oz of nuts or seeds (Butters, toasted, or in sauces), 4-6 oz of leafy greens, Always about a cup of chopped peppers or squash, 1-2 tomatoes, 2-4 oz other veggies) 2-4oz coconut yogurt, 2 cups of a nut milk, 1-2oz of fruit, 2-4tbsp Nutritional Yeast( Great source of many nutrients)  Always some form of this as a example, I even make a homemade bulking ice cream of nut butters, coconut yogurt, nut milk, seed meals, pectin, and scoops of protein powder.

On my story, I have in the past 3 weeks managed to gain 3lbs, mostly impart to upping my fat intake, upping my protein intake, and I starting using a bunch of homemade vegan cheese sauces in cooking.  5' 11" Male and just at 127.8lbs today. 

[Jmg]

5 hours ago, MarieH33 said:

What is  this condition called NCGS (non-celiac gluten sensitivity), which is more common than celiac disease?  

Hi Marie

I wrote this in another thread:

Some people, such as myself, have what's currently termed 'Non celiac gluten sensitivity' - this is less well understood than Celiac and is to some extent a diagnosis of exclusion, once celiac is excluded then those patients who demonstrate a reaction to the gluten free diet may be deemed NCGS. One researcher in the field, Alessio Fasano, estimates that up to 6% of the population may fit this category, others will doubtless disagree.

These people do not show the atrophication of the villi associated with celiac but they can show a variety of other reactions, often neurological. Open Original Shared Link suggests these people also undergo an immune mediated response to Open Original Shared Link. I really wish I could be more definitive, as this is the box I'm currently in but the condition remains subject to debate and there is also ongoing discussion about whether this condition is in fact not caused by gluten and perhaps by another component of grain, see the Open Original Shared Link for more.  

So basically, if people test negative for Celiac as I did but appear to react positively to the gluten free diet then NCGS is a catch all label.  

 

5 hours ago, MarieH33 said:

Does it mean I could be gluten sensitive without having Celiac disease?

Absolutely! In fact there's evidence that suggests NCGS sufferers are more likely to show neurological reactions to gluten than the 'classic' celiac gastrointestinal reactions:

Open Original Shared Link

Open Original Shared Link

There's some anecdotal evidence here you may also find interesting:

Open Original Shared Link

If the diagnostic process for celiac has been completed you've nothing to lose and potentially much to gain from trialliing the diet. I suggest you keep a food journal, noting what you eat, the time and how you're feeling. Also note the time of any of the pain symptoms. That may help you tie diet changes to any improvement in your condition.

I went through a gluten challenge and endoscopy and tested negative for celiac but I already knew I'd be gluten free for life at the end results notwithstanding due to the reaction I had on the diet. Lot's of neuro issues resolved or drastically improved. I hope you have similar results. Best of luck

Matt

[tessa25]

I'd try going gluten free if I were in your position. Give it a try, hopefully it works. The food log suggested above is a great way to see what bothers you. It can take a few days for a food to have an effect. If gluten free doesn't help then try a diet where you start with a very simple diet that doesn't bother you, then add on a new food every few days.

 

[GFinDC]

9 hours ago, MarieH33 said:

...

What is  this condition called NCGS (non-celiac gluten sensitivity), which is more common than celiac disease? Does it mean I could be gluten sensitive without having Celiac disease?   I am willing to try and find out. (Today is day 3 that I have eliminated gluten).  I hope I do not get more intestinal issues from my body missing gluten. Sigh.. However,  I get the sense from some of the responses that if none of my blood-work is abnormal (with exception of the endoscope), then it doesn't make sense to try gluten free.? please help. Ty Marie

Hi Marie,

NCGS is more common than celiac disease, and it causes symptoms in some people when they eat wheat or other gluten foods. JMG has it right, you would need to eliminate gluten to see if your symptoms change.  If you are not celiac but you do have symptoms from eating gluten, you could fall into the NCGS group.

Something else you could read up on is gluten ataxia.  It is a associated condition with celiac disease where the immune attack happens to the brain.  People with gluten ataxia sometimes don't test well on the regular celiac antibody testing.   The same testing issues happen sometimes with DH (dermatitis herpetiformis), another condition associated with celiac disease.  It could be that the antibodies are concentrated in the brain or skin and so don't show up much in the blood testing.  Just a theory of mine.

Regardless, going gluten-free is the best treatment for any of these conditions, and the only treatment that can really help long term.

[MarieH33]

Hi , How is everyone? Thank you all for your comments. I have read them all.  Today is 6 days gluten free, my stomach is bloated. I am very lightheaded and feel out of sorts. My intestines are doing "strange things", Even, um sorry,  my anus is burning.  Is this normal for 6 days out of going gluten free? I don't know what to expect.  I know it's too soon to feel better or some kind of positive change. But should I be feeling worse? 

[MarieH33]

On 1/29/2017 at 5:31 AM, Ennis_TX said:

Open Original Shared Link

Is a partial defatted protein powder based on pumpkin seeds, (and one of the few things that help me put on weight). You can add a bit to everything good source of many trace minerals and a great amino acid complex. As for hemp seed protein it is a pain getting gluten-free now days. The hemp market took off and farmers grow it on rotation with wheat often and use shared equipment. Best and last two sources I have found are from Jarrow Formulas brand you can find on amazon, and Gerbs Allergen Friendly foods makes a ground hemp meal that works pretty good.  I use LuckyVitamin for most of my protein powders, and price check against amazon.

Note, I eat like a body builder a mostly ketogenic diet myself, my aver meals consist of 2-3 scoops of  protein powders or 8-10 egg whites, 2-5 oz of nuts or seeds (Butters, toasted, or in sauces), 4-6 oz of leafy greens, Always about a cup of chopped peppers or squash, 1-2 tomatoes, 2-4 oz other veggies) 2-4oz coconut yogurt, 2 cups of a nut milk, 1-2oz of fruit, 2-4tbsp Nutritional Yeast( Great source of many nutrients)  Always some form of this as a example, I even make a homemade bulking ice cream of nut butters, coconut yogurt, nut milk, seed meals, pectin, and scoops of protein powder.

On my story, I have in the past 3 weeks managed to gain 3lbs, mostly impart to upping my fat intake, upping my protein intake, and I starting using a bunch of homemade vegan cheese sauces in cooking.  5' 11" Male and just at 127.8lbs today. 

 

Thank you, Ennis, This all sounds healthy. But it gets a bit complicated and confusing for me. To make matters worse I live alone, I do not have a significant other that could help me. Someone  I  could bounce some info off of.  So much good stuff out there, wish I had better access to all of this  

Marie

[MarieH33]

9 minutes ago, MarieH33 said:

Hi , How is everyone? Thank you all for your comments. I have read them all.  Today is 6 days gluten free, my stomach is bloated. I am very lightheaded and feel out of sorts. My intestines are doing "strange things", Even, um sorry,  my anus is burning.  Is this normal for 6 days out of going gluten free? I don't know what to expect.  I know it's too soon to feel better or some kind of positive change. But should I be feeling worse? 

 

 

[Jmg]

47 minutes ago, MarieH33 said:

Hi , How is everyone? Thank you all for your comments. I have read them all.  Today is 6 days gluten free, my stomach is bloated. I am very lightheaded and feel out of sorts. My intestines are doing "strange things", Even, um sorry,  my anus is burning.  Is this normal for 6 days out of going gluten free? I don't know what to expect.  I know it's too soon to feel better or some kind of positive change. But should I be feeling worse? 

Hello again.

Is removing gluten the only change you've made to your diet?  If that's so, then the fact you're reacting quite strongly is very suggestive of you having an issue with gluten. A lot of people Open Original Shared Link, that could be what's happening to you.  I know I experienced a lot of stomach churning and noise! The lightheaded and out of sorts feeling could be linked to the way gluten can affect the brain, click the link above for a more detailed explanation.

However, if you've also cut out a lot of other things then you may be running into some issues as your body copes with lower sugar intake. There are others here who know more about diets. My suggestion would be not to make massive changes at the moment you remove gluten. I think you're best making the other changes in a more gradual way to give your body a chance to adapt. 

Keep calm and carry on!  

 

[Ennis-TX]

44 minutes ago, Jmg said:

Hello again.

Is removing gluten the only change you've made to your diet?  If that's so, then the fact you're reacting quite strongly is very suggestive of you having an issue with gluten. A lot of people Open Original Shared Link, that could be what's happening to you.  I know I experienced a lot of stomach churning and noise! The lightheaded and out of sorts feeling could be linked to the way gluten can affect the brain, click the link above for a more detailed explanation.

However, if you've also cut out a lot of other things then you may be running into some issues as your body copes with lower sugar intake. There are others here who know more about diets. My suggestion would be not to make massive changes at the moment you remove gluten. I think you're best making the other changes in a more gradual way to give your body a chance to adapt. 

Keep calm and carry on!  

 

There is a bit of a withdrawal, for me it was like a drug withdrawal where you stop something like antidepressants cold turkey. Hit like a hammer and lasted  2 week, after that I started feeling better then I had in years (sorta forgot that part of it as it has been so long ago). But yeah perhaps keeping diet simple and taking it easy for the first 2 weeks. We do normally suggest sticking to a whole foods diet, and staying away from even GF processed foods for awhile. Make sure what you get is GF and preferably certified, I have some links to where to get all kinds of foods, grocery's, supplements etc. to make transition simpler, even find GF foods to crush those tempting cravings.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

[GFinDC]

2 hours ago, MarieH33 said:

Hi , How is everyone? Thank you all for your comments. I have read them all.  Today is 6 days gluten free, my stomach is bloated. I am very lightheaded and feel out of sorts. My intestines are doing "strange things", Even, um sorry,  my anus is burning.  Is this normal for 6 days out of going gluten free? I don't know what to expect.  I know it's too soon to feel better or some kind of positive change. But should I be feeling worse? 

Hi Marie,

Now you are living eh?

That kind of reaction means your body is going through changes.   Most likely your gut is trying to heal, which is good.  One of the things about healing the villi lining the gut is they grow back and that new surface area becomes home to even more bacteria.  So the gut bacteria balance can get out of whack.  Any sugar and carbs feeds the bacteria like feeding candy to a hyper kid.  Also dairy can have the same affect because dairy sugar (lactose) is hard to digest by a damaged gut.  So avoiding carbs, sugar and dairy can be helpful at the beginning.

It is helpful to stick with simple foods like meats, veggies, nuts, and eggs when starting.  No processed foods.  Probiotics may help too, like Jarrow Formulas Jarrowdolphilus.

My gut had spasms for 5 to 6 weeks after going gf.  I am not sure there is any way to totally avoid symptoms after going gf.  Healing is a rough process sometimes.  Making sure you avoid all gluten is important though.  A whole foods diet can help with that.

There is a Newbie 101 thread stickied in the "Coping With" forum section.

You might want to stock up on peppermint tea (for bloating) and aspirin  (for pain) and Pepto Bismol (for coating the gut insides).

[faisal86]

On 1/28/2017 at 1:59 PM, MarieH33 said:

Hi, I am new to this site.  I do not have Celiac disease. I had a biopsy of my intestine during a Colonoscopy in 2009, it was negative for Celiac. (I was not being checked for Celiac at the time, My Gastro said he does Celiac biopsies when doing a Colonoscopy, so that's how I found out).   I suffer with IBS since 1980, and now Neuropathic pain since 2011.  Docs (Neurologists) are calling it Idiopathic small fiber neuropathy.  I had millions of tests, blood work and diagnostic tests. There is no prove of any Autoimmunity. I believe there is an Autoimmune component to this condition (disease).  I am thinking about trying gluten -free to see if it helps with this horrific pain.  I have cut out all sugar and most diary. I eat plenty of green vegetables and some fruit. Mostly berries, kiwi , pears and apples.   I have come to this site out of desperation. I do not know where to start. I am already 'underweight" , so I can not afford to lose any more weight.  I am hoping someone can guide me in the right direction on how to start a gluten free diet, in case I truly am gluten-insensitive.  Has anyone else had the same experience? 

 

 

Hi MarieH33,

I'm 30 years old and have felt many symptoms like depression, anxiety, bloating, chest pains, internal inflammation in my stomach all the way up to my throat , hemorrhoids, constipation, back pains, joint pains, and many more. I was off gluten for sometime but symptoms won't go away. I would feel slightly better, but that's all to it. Finally i took a bold step and got an FOOD INTOLERANCE TEST IgE. Where i was test for 250 foods. Results were surprising. I was actually intolerant to dairy, eggs, yeast, some fruits, gluten, corn (this is gluten free grain LOL), many nuts, some fishes, and many more things. I had to bring a revolution to change my life style and diet. Since 3 months i feel alive once again, i feel like myself, i feel strong. My advise get an IgE food intolerance test. Tell your doctor to run this test with maximum foods available. Hope this can help you.

Cheers