I feel like I’m going mad!

[alexlouise]

Hi, sorry for the dramatic title but I’m at the end of my tether! Apologies for the very long post as well. 

Early January 2020 I didn’t have any carbs/dairy milk for 2 weeks and was on antibiotics for bad skin (I know, like an idiot - god do I regret those stupid things now). I can’t remember exactly when but somewhere in the end 2 weeks of January I suddenly began experiencing really bad diarrhoea, bloating, burping, gas, but no abdominal pain. I think it was roughly around the same time I reintroduced carbs & dairy milk. I initially thought it was lactose intolerance but it isn’t and I’ve had so, so many tests and they all come back clear. They did think it might be SIBO but I took antibiotics & probiotics - no difference. I’ve just been told I have IBS.

I’ve had 2 coeliac blood tests - one in April one in the summer (I was eating gluten both times) and both were clear. My first one was very low (0.3) and I don’t know my second. They were IgA Tissue transglutaminase antibody tests & a total IgA test (I’m not deficient). However I’ve realised the days I wake up feeling nauseous are only the days when I’ve had gluten the day before (though I have diarrhoea whether I have gluten or not). The more gluten I have the more sick I feel the next morning. I also have regular tingling in my hands and feet (so much so that I got a test for diabetes - all clear). I’ve cut out gluten (not the small amounts coeliacs need to in soy sauce etc though) for a very short period of time and didn’t see much of difference apart from the morning nausea.

I’ve felt pretty dreadful this last year and it’s really affecting me. Nothing I try - antibiotics, low FODMAP, probiotics among other things - works. The only foods I can pinpoint that cause trouble are sweet potatoes, oats and gluten, tho when I cut out all carbs and had just extremely meat & low carb veg for 3 days I felt entirely normal. Either I’ve given myself an issue with all carbs or I’m wondering if there a chance I could be coeliac despite the negative blood tests as it seems to have arisen after a time with 0 exposure to gluten? Do I ask for a biopsy or is it pointless seeing as my blood tests were completely clear - is it just IBS?

Sorry this is so long, any help would be hugely appreciated! 

 

 

[trents]

Two questions:

1. When you have had the celiac blood tests done you say you were on gluten both times. But for how long before the tests? Eating gluten and then eating gluten free for less than two months can invalidate the tests.

2. With regard to dairy, have you considered you may have an issue with the casein instead of the lactose. Or that you are intolerant of some other food such as soy or corn or oats?

3. Have you been tested for SIBO? The fact that you feel fine on an extremely low carb diet suggests that might be an issue to me.

[GFinDC]

Most people with celiac disease are still undiagnosed today.  The celiac disease testing process isn't perfect at this time.  People with Dh (dermatitis herpetiformis) may not show up positive on blood antibody tests at first.  But the antibodies do appear in the skin.  They have celiac disease but are not diagnosed by blood tests but a skin biopsy instead.  Just want you to understand that the blood tests are not a perfect thing.  You can be sero-negative and still have celiac disease.

It seems to me you can wait until you may eventually get a positive blood antibody test someday, or assume you have celiac and start the gluten-free diet for real.  Your body is a valid test instrument.  If you eliminate gluten 100% from your diet for 6 months it should tell the tale.  There is also condition called (NCGS) non-celiac gluten intolerance that doesn't show up on any blood test.  More people have NCGS than have celiac disease.  But the treatment is the same, staying away from gluten.

[alexlouise]

1 hour ago, trents said:

Two questions:

1. When you have had the celiac blood tests done you say you were on gluten both times. But for how long before the tests? Eating gluten and then eating gluten free for less than two months can invalidate the tests.

2. With regard to dairy, have you considered you may have an issue with the casein instead of the lactose. Or that you are intolerant of some other food such as soy or corn or oats?

3. Have you been tested for SIBO? The fact that you feel fine on an extremely low carb diet suggests that might be an issue to me.

Thank you so much for replying!!

1. I was eating gluten the whole time from what I remember - I didn't try going gluten free/low fodmap until after my second blood test

2. I've cut out dairy completely and the problem remained. I've also cut out oats completely, same issue. I haven't cut out soy or corn but I can't remember the last time I had corn and don't have much soy. Maybe I should try that

3. I have back in August by lactulose breath test and it came back positive - but I had 2 rounds of antibiotics (2 weeks each) after that and have tried different probiotics and they all made 0 difference so the doctor said it was likely a false positive as apparently they're very common? I don't really know what it could be anymore!

[alexlouise]

52 minutes ago, GFinDC said:

Most people with celiac disease are still undiagnosed today.  The celiac disease testing process isn't perfect at this time.  People with Dh (dermatitis herpetiformis) may not show up positive on blood antibody tests at first.  But the antibodies do appear in the skin.  They have celiac disease but are not diagnosed by blood tests but a skin biopsy instead.  Just want you to understand that the blood tests are not a perfect thing.  You can be sero-negative and still have celiac disease.

It seems to me you can wait until you may eventually get a positive blood antibody test someday, or assume you have celiac and start the gluten-free diet for real.  Your body is a valid test instrument.  If you eliminate gluten 100% from your diet for 6 months it should tell the tale.  There is also condition called (NCGS) non-celiac gluten intolerance that doesn't show up on any blood test.  More people have NCGS than have celiac disease.  But the treatment is the same, staying away from gluten.

Thanks for replying! I thought about this and think I might do it. My doctor wants to put me on an anti-depressant because he thinks it's IBS though so not sure what to do about that. The only thing is that the rest of my family aren't gluten free and don't want to try it - how much of a problem would cross contamination be with chopping boards, toasters, utensils etc. if I was to try and go completely gluten free?

[GFinDC]

51 minutes ago, alexlouise said:

Thanks for replying! I thought about this and think I might do it. My doctor wants to put me on an anti-depressant because he thinks it's IBS though so not sure what to do about that. The only thing is that the rest of my family aren't gluten free and don't want to try it - how much of a problem would cross contamination be with chopping boards, toasters, utensils etc. if I was to try and go completely gluten free?

I live with gluten eaters. I have my own toaster, mini refrig, and silverware.  It works.  I'd skip the anti-depressants and concentrate on diet changes myself.  Too many ingredients spoils the soup?  It can be hard to tell what's going on if if you are changing too many things at the same time.

Edited February 1, 2021 by GFinDC

[alexlouise]

9 minutes ago, GFinDC said:

I live with gluten eaters. I have my own toaster, mini refrig, and silverware.  It works.  I'd skip the anti-depressants and concentrate on diet changes myself.  Too many ingredients spoils the soup?  It can be hard to tell what's going on if if you are changing too many things at the same time.

Ah ok, thank you. Yeah I'm not keen to go on anti-depressants so will try absolutely no gluten and see if that helps. I suppose I just can't work out why it feels like absolutely everything I eat presents such a problem - do you know if undiagnosed coeliac disease can impact digestion of other foods (especially carbs) due to the flattened villi? 

[Celihack]

38 minutes ago, alexlouise said:

Ah ok, thank you. Yeah I'm not keen to go on anti-depressants so will try absolutely no gluten and see if that helps. I suppose I just can't work out why it feels like absolutely everything I eat presents such a problem - do you know if undiagnosed coeliac disease can impact digestion of other foods (especially carbs) due to the flattened villi? 

Do you drink coffee? If so then weather ibs is the symptom or the actual case you will want to drop that as well. Ibs is one of my main symptoms. 

 

[trents]

1 hour ago, alexlouise said:

Ah ok, thank you. Yeah I'm not keen to go on anti-depressants so will try absolutely no gluten and see if that helps. I suppose I just can't work out why it feels like absolutely everything I eat presents such a problem - do you know if undiagnosed coeliac disease can impact digestion of other foods (especially carbs) due to the flattened villi? 

Absolutely! Celiac disease affects the digestion of many, maybe all, foods in one way or another.

[charks]

I may be stupid but I don't understand why someone with IBS should go on antidepressants.

There was a very good show on UK tv this week postulating that depression can be cured by diet/ probiotics. I was very depressed before giving up gluten. My partner said that I was like a different person. Within 2 weeks of being gluten free he was ecstatic to have the old me back. My brother said the same thing. And many of my friends. 

I believe in functional medicine - don't treat the symptom, treat the cause.   

[alexlouise]

58 minutes ago, Celihack2 said:

Do you drink coffee? If so then weather ibs is the symptom or the actual case you will want to drop that as well. Ibs is one of my main symptoms. 

 

No I don't drink coffee! Agreed - I think it's probably best to avoid it with digestive issues  

[alexlouise]

10 minutes ago, charks said:

I may be stupid but I don't understand why someone with IBS should go on antidepressants.

There was a very good show on UK tv this week postulating that depression can be cured by diet/ probiotics. I was very depressed before giving up gluten. My partner said that I was like a different person. Within 2 weeks of being gluten free he was ecstatic to have the old me back. My brother said the same thing. And many of my friends. 

I believe in functional medicine - don't treat the symptom, treat the cause.   

I'm so glad cutting out gluten has meant your depression is better/cured! Apparently the theory is that the nerves in my gut are oversensitive (though I always questioned this as I never really have pain) and that this drug has been proven to help with IBS (I've tried lots of supplements, dietary interventions etc. in the past and none have worked). I agree though - I'm desperate not to go on drugs and really want to try and figure out the root cause and address it rather than mask the symptoms. I just really, really want to feel better and so me questioning whether it could be coeliac was part of that!

[charks]

I think this is a classical case of treating the symptom not cause. I remember reading somewhere  that antidepressants only work where the patient is clinically depressed and it is the depression that is causing the IBS.

Personally I would do anything to avoid antidepressants. They have so many side effects and are very addictive ( I have addictive personality issues ). My celiac test was negative too but the fact that I got so much better on a gluten free diet speaks volumes. I notice that you are not on a 100% gluten free diet. Even eating a small amount of gluten can make you ill.   

[trents]

Certainly, treating the cause is preferable to treating the symptom when the cause is known and is responsive to functional intervention. That is not always the case, however, especially when the cause is a genetic malfunction. And it can also be true that treating the symptom may be more effective, less costly and more practical than addressing the cause. For instance, I have mild allergies to many common foods and air born environmental elements. I can choose to not eat much of anything and wear a gas mask or I can take Zertek and live a more normal life without any real side effects from the medication. Sometimes on this forum we a too quick to trash conventional medicine.

[charks]

5 minutes ago, trents said:

Certainly, treating the cause is preferable to treating the symptom when the cause is known and is responsive to functional intervention. That is not always the case, however, especially when the cause is a genetic malfunction. And it can also be true that treating the symptom may be more effective, less costly and more practical than addressing the cause. For instance, I have mild allergies to many common foods and air born environmental elements. I can choose to not eat much of anything and wear a gas mask or I can take Zertek and live a more normal life without any real side effects from the medication. Sometimes on this forum we a too quick to trash conventional medicine.

I totally agree with you trents. I had a relative die because she refused to take drugs. You can take it too far. But we all agree on this forum that most doctors are useless at diagnosing celiac disease. 

[alexlouise]

10 minutes ago, trents said:

Certainly, treating the cause is preferable to treating the symptom when the cause is known and is responsive to functional intervention. That is not always the case, however, especially when the cause is a genetic malfunction. And it can also be true that treating the symptom may be more effective, less costly and more practical than addressing the cause. For instance, I have mild allergies to many common foods and air born environmental elements. I can choose to not eat much of anything and wear a gas mask or I can take Zertek and live a more normal life without any real side effects from the medication. Sometimes on this forum we a too quick to trash conventional medicine.

Yes sorry I completely agree. I'm absolutely not opposed to conventional medicine and know it can be brilliant! I suppose I'm nervous about going on certain drugs (which I know have side effects) when the cause of my issues aren't really known...

[RMJ]

Some people with celiac disease have a normal TTG antibody test but abnormal/elevated DGP antibodies (DGP=deamidated gliadin peptides).  If that wasn’t part of your 2nd test you might try to have that done.

[knitty kitty]

You can have thiamine deficiency with or without Celiac Disease.

Antibiotics for bad skin and antibiotics for SIBO can contribute to Thiamine deficiency.

Antibiotics cause thiamine depletion.  Sulfa drugs, including sulfa based antibiotics or the sulfa preservatives used in them, contribute to Thiamine deficiency.  Your body needs thiamine to process sulfites.  Sulfites are also used in perfumes and anything scented (laundry detergent, dryer sheets, bug spray, air fresheners, candles, etc.).  

Every cell in your body needs thiamine to provide energy for its functions and enzymes for chemical reactions.   

Without enough thiamine, you can't properly digest carbohydrates (sweet potatoes, oats, rice, wheat products, etc.) and sugars (lactose, sucrose, fructose) and fats.   For every 1000 calories (kcal) carbohydrates, you need at least 0.5 mg thiamine.  Sweet potatoes contain chemicals (thiaminase) that break thiamine apart destroying it and contributing to Thiamine insufficiency.

Those undigested carbohydrates squish through your intestines and your intestinal bacteria have a field day digesting those carbs. They have parties, making lots of gas and bloating, and reproduce out of control.  The increased numbers of bacteria will compete with you for thiamine.  Care to guess who wins?  The bacteria continue to prosper while you get sicker.  

One of the things thiamine does is control the intestinal bacteria.  Without enough thiamine, the bacteria start growing outside of the large intestine, where we like them to live, and  they colonize new territory, the small intestine, where we don't like them to live.  Hence, Small Intestinal Bacterial Overgrowth=SIBO.  Thiamine is absorbed in the small intestine where the invading bacteria overgrow.  The bacteria absorb any thiamine you've consumed before you can.  

Thiamine deficiency will cause gastrointestinal symptoms:  nausea, Gerd, Reflux, Leaky Gut and IBS like symptoms.  Thiamine deficiency will cause tingly hands and feet as you describe, which can become burning pins and needles.    Thiamine deficiency can cause depression, apathy, anorexia, anxiety, and panic attacks.

Neurotransmitters (those feel good brain chemicals) are made in the digestive tract.  Without enough thiamine to provide energy and enzymes for making neurotransmitters, you feel depressed.  Doctors frequently prescribe antidepressants to "sedate" the digestive tract because your digestive tract has receptors for neurotransmitters just like your brain.  

Single vitamin deficiencies are rare.  The eight essential B vitamins are all interdependent.  If there's a problem with one, there's usually more that are low or deficient.  Skin problems can be due to inadequacies in other B vitamins like niacin and riboflavin.

Thiamine deficiency shows up first because it cannot be stored in the body for long.  Deficiency in thiamine can occur in as little as nine days.  Symptoms can wax and wane depending on amount of thiamine consumed (whether you ate lots of thiamine rich foods that day) and how much thiamine is required.  (More thiamine is required during exercise, illness, emotional stress, hot weather.)

You said you felt better on a low carb and meat diet probably because you weren't using thiamine to process excess carbohydrates and had more thiamine available for your body to utilize.

Thiamine needs magnesium, in addition to the other essential B vitamins, to work properly.  So,  magnesium, a good B-Complex with additional high dose Thiamine should be beneficial.

Thiamine needs transporters to get into cells.  These transporters turn off when there's a thiamine deficiency.  To turn them back on, high doses of thiamine need to be taken in order to flood into the cells freely.  Dr. Lonsdale and Dr. Marrs have written lots about high dose Thiamine.  They recommend allithiamine or lipothiamine which cross the blood/brain barrier, but any  thiamine will help.  They do warn to gradually increase doses up or down, and there is a period of feeling yucky after starting, but it goes away in a few days.  Improvement can be seen in just a few hours.  Here's their website..

 http://www.hormonesmatter.com/vitamin-therapy-paradox/

I know a lot about thiamine deficiency because I experienced it myself.  My doctors gave me prescriptions to treat the symptoms of IBS (undiagnosed Celiac, in my case, and a high carbohydrate Standard American diet).  The medications are known to interfere with thiamine.  My symptoms worsened, more medications given (including antidepressants). 

Doctors are trained to prescribe pharmaceuticals to make money.  Doctors in training are given about fifteen minutes of instructions on vitamins and minerals and nutrition.  It's like going to the Car Repair Shop and being sold mud flaps, mirror charms, and mufflers instead of spark plugs which will actually get your car running..

My doctors did not recognize thiamine deficiency symptoms, even Wernicke's Encephalopathy symptoms, outside of alcoholism.  So when I adamantly stated I never drink alcohol, they shrugged and wrote me off as hypochondriac.  Being a microbiologist, and loving research, I searched for my own answers.  

Celiac Disease causes malabsorption which results in malnutrition, aka vitamin and mineral deficiencies.  Thiamine deficiency shows up quickly because we need so much and use it up so quickly when we're ill.  With thiamine insufficiency, other vitamins can't do their jobs and it becomes a spiraling decent into illness.

Here's your reading list.....

 

"Nutrition and Functional Neurochemistry"

https://www.ncbi.nlm.nih.gov/books/NBK28242/

And...

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

"Thiamine Nutritional Status and Depressive Symptoms Are Inversely Associated among Older Chinese Adults"

https://academic.oup.com/jn/article/143/1/53/4569792

And...

"Adjuvant thiamine improved standard treatment in patients with major depressive disorder: results from a randomized, double-blind, and placebo-controlled clinical trial"

https://pubmed.ncbi.nlm.nih.gov/26984349/

And...

 

"Thiamine deficiency in a dog associated with exclusive consumption of boiled sweet potato (Ipomoea batatas): Serial changes in clinical findings, magnetic resonance imaging findings and blood lactate and thiamine concentrations"

https://onlinelibrary.wiley.com/doi/full/10.1002/vms3.352

 

And...

"Pathophysiology, prevention, and treatment of beriberi after gastric surgery"

https://academic.oup.com/nutritionreviews/article/78/12/1015/5835520

And....

"When SIBO & IBS-Constipation are just unrecognized thiamine deficiency"

https://www.objectivenutrients.com/insights/when-sibo-ibs-constipation-are-unrecognized

 

And...

"Thiamine deficiency - A consequence or cause of SIBO?"

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

 

Not a doctor, but I suggest a trial of over-the-counter thiamine Vitamin B1 supplements before starting on antidepressants.  Of course, check with your doctor because we can't give medical advice. 

Thiamine is water soluble.  Thiamine has no toxicity limit.  (At most if you take too much it can make your tummy upset.  So, what's new?)  This is what I learned from my experience with and recovery from thiamine deficiency.

 

Edited February 1, 2021 by knitty kitty
Typo

[GFinDC]

7 hours ago, alexlouise said:

Ah ok, thank you. Yeah I'm not keen to go on anti-depressants so will try absolutely no gluten and see if that helps. I suppose I just can't work out why it feels like absolutely everything I eat presents such a problem - do you know if undiagnosed coeliac disease can impact digestion of other foods (especially carbs) due to the flattened villi? 

Hi,

Yes, celiac disease is often a digestive system condition.  Classic celiac destroys the villi that line the small intestine.  Those villi produce enzymes that aid digestion.  They also absorb nutrients.  The villi provide a large surface area for bacteria to inhabit.  Bacteria can aid in digestion also or cause GI symptoms if they are the wrong kind of bacteria.  If your small intestine lining is raw and irritated digestion is going to be poor/symptomatic.  Any food can cause symptoms if the intestines are irritated already. 

[Ashleymc]

I don’t have as much good info as the other people replying, but I will say that before going gluten free, soy sauce bothered me far more than many other types of gluten - I would react worse to a tablespoon of soy sauce that I would to a whole roll for example. In the five years I’ve been gluten-free, I’ve been accidentally glutened from soy sauce at a sushi place and was super sick versus accidentally glutened from regular pizza and was just mildly ill. If I were you I would commit to 100% gluten-free and possibly DF as well for a number of weeks and see how you feel before forcing yourself into anything more restrictive. If you do too much at once it will be harder to stick with it and harder to know what’s causing the problem. 

[trents]

Many celiacs are also soy and dairy intolerant so the combination of the wheat and the soy in the sauce may have been a double whammy. Can you safely consume soy products apart from those that also contain wheat gluten?

[Ashleymc]

Yes, edamame, tamari, even soy milk don’t bother me at all. It’s really strange, but my point to OP is some people think they are going mainly gluten free but you can’t easily judge the amount of gluten in something just by eyeballing it. It seems to me that soy sauce packs a lot of gluten in a small amount. It’s weird!

[Wheatwacked]

I

 

On 2/1/2021 at 8:08 AM, alexlouise said:

I’ve cut out gluten (not the small amounts coeliacs need to in soy sauce etc though) for a very short period of time and didn’t see much of difference apart from the morning nausea.

Your short trial of a limited gluten free diet has given you the answer. Your life depends on it.

In the U.S. the first ingredient in Soy Sauce is wheat. Soy is the second of the two ingredients, which makes American Soy sauces at least 51% wheat. Tamari is soy sauce made of 100% fermented soy. Make it your choice. BYOSS (bring your own soy sauce). While fermented foods are generally good, soy sauce is not.

A gluten free diet limits you only if you only eat processed foods. Try 100% pasture fed (no grains) milk. It's a great source of calcium, magnesium, potassium. phosphorus, zinc, selenium, B5(pantothenic acid- essential in the Krebs's Cycle), folate, B!2 and vitamin A. To be labelled Organic Milk only requires 120 days pasture fed. The supplements fed the cows to increase volume and milkfat production make the milk not so good for you. Fermented Pickles will help repopulate you gut with beneficial bacteria. Eat food with more potassium to balance the sodium. The recommended intakes are 4700g potassium and 600 g sodium.