Do You Have Similar Symptoms?

[Ucat]

Hi all,

I've been on a gluten-free diet for many years (occasionally gave up and ate anything I wanted) but even while gluten-free never followed it strictly, so included small quantities of gluten/ possibly-gluten-contaminated foods. I did some very strict diets which were likely completely gluten free, and I did feel better, e.g. some of my stricter raw food diets, juice fasts, and the diet described in point (1, in bold type) below.

I took the celiac blood test many years ago while on a gluten-free diet and it came back negative. So I didn't worry about it for a long time but I did notice that gluten seemed to cause problems so I stayed away from it a lot. I'm now forcing myself to eat gluten for three weeks so that I can take the blood test again and get a reliable result. (They say to eat it for six weeks but I'm hoping three will be enough!) I noticed symptoms very soon after I started eating gluten this time: mild stomach pains, more bloatedness, loose stools, gas, sounds of air moving in my abdomen, etc. Nausea also, although that could be linked to the iron supplements I started taking at the same time.

I'd like to know whether others have similar experiences as me and am therefore listing possibly related issues below. I'm also keen to get any thoughts on whether it looks likely I might be celiac or not (although I know it can only diagnosed by my doctor so feel free to give your thoughts without worry)...

1. Constantly bloated stomach, seems to gradually reduce (over many months) when I avoid all cooked carbs and just eat eggs, fish, fruit, tofu, some nuts and seeds, raw vegetables and oils (no cooked carbs, no cooked vegetables, no condiments or stock cubes, no tofu, almost no packaged foods, no yoghurt, no yeast, no added sugar, no honey, no sauces, no grains, no high-histamine foods, no alcohol, etc.). The bloatedness is always less in the morning, worse in the evening, and even worse during the period. I remember starting to notice this back in 2007, possibly earlier. Up to 2005 I didn't worry much about what I was eating and don't remember having an especially bloated abdomen.

2. I remember that sometimes as a child I had a sharp pain when trying to poo. I still seem to get that but only when I eat gluten.

3. Menstrual pains ever since I was old enough to have a period. One day per cycle in the beginning and gradually over the years increasing. Now I'm a little over 40 years old and the pain lasts 2-3 days. Possibly endometriosis. Pain is mainly on the right side, lower abdomen, it's linked to gas (as when that moves it affects the pain). Whole-body feeling of inflammation/ unwell, sometimes nausea, debilitating pains, sometimes ringing in the ears/ dizziness/ numb arms. Passed out one time and almost passed out another time. Ibuprofen anti-inflammatory pain killers help the pain but I have to take them early enough to take effect. Sometimes they can take many hours before they work.

4. Ever since I was a teenager I've needed 10 hours of sleep per night to feel rested during the day. I've tried many things to increase my energy and the only thing that seemed to effect the amount of sleep I needed was a raw food diet, which helped a lot but I couldn't sustain it in the long term due to work mainly. I can force myself to get up in the morning, that is not the problem, but if I haven't slept enough I drag through the day very tired, my brain doesn't function properly and I get sleepy during the day, no motivation, don't feel sociable.

5. Digestive issues have increased over the years and currently I seem to have lots of food intolerances. Eating any cooked starchy foods (even cauliflower or quinoa) causes my face to bloat the next morning (as if I had an allergic reaction to something) - this includes all breads and crackers, potatoes, root vegetables, grains, etc. but they are fine if eaten raw/ uncooked. Just read today that most carbs are digested in the small intestine/ many digestive enzymes are formed in the small intestine - and that's where the celiacs seem to have a problem. Dairy makes sinus congestion worse (which I have constantly anyway) and causes a chronic cough. Alcohol also makes the chronic cough appear. Etc. Etc.

6. Weight gain that is very difficult to shift and seems to be linked to eating cooked carbs, grains, processed foods and sugar. Started noticing this in 2005, in my mid-twenties.

7. Anxiety. I've been diagnosed with GAD and it seems to get worse when I eat gluten, oats, sugar, processed carbs, alcohol, grains, dairy. Sticking to the diet described in point (1) seems to reduce anxiety over time (a lot) but it can come back randomly, e.g. from drinking green tea in a bag (wonder if it's because there is gluten in the tea bag or because the tea is dehydrating/ something else - drinking red bull does not cause this problem so it's not caffeine).

8. Insomnia. Eating any packaged foods after 4pm will cause my heartbeat to feel stronger and anxiety/ low moods/ guilt feelings to appear, which stops me sleeping. If I only eat fresh fruit after 4pm these problems don't appear and I fall asleep fine most of the time (unless I'm under lots of stress in which case I can't sleep anyway). I get the same problem during the day but feel the effects less as I'm not trying to sleep. Motherwort tincture/ tea can usually overcome this problem and help me sleep, if I take it in high enough quantity late in the evening.

9. My stress levels have been high since the year 2000-ish but reached a peak around 2005 when the bloated belly started appearing (if I remember right). I'm thinking this could be when my celiac gene got activated? (Although I don't know if I have a celiac gene.) I've been under a lot of stress continuously since then also, due to work and financial worries mainly; and the health problems; and trying to diet and figure out how to feel better for over a decade now, with only limited/ intermittent success.

10. Leaky gut diagnosed by nutritionists, linked to food intolerances. I'm thinking this could be either caused by celiac, the stressful lifestyle, or the painkillers I've had to take every month for over two decades now. IgG tests (by YorkTest) recently also indicate that I'm intolerant to gluten (gliadin), wheat, yeast, some nuts and a few other foods.

11. Someone in the family has recently been shown to carry a celiac gene. Other seems to have a problem with gluten but no-one is diagnosed with celiac.

12. Things that seem linked to gluten consumption: worse menstrual pain, diarrhea/ loose stools, gas, weight gain, bloatedness, anxiety, emotionally a bit more 'numb' (as if there is a 'veil' between me and reality), stomach pain (only occasionally), stiff neck and shoulders (linked to work stress), worse sinus congestion, blurry vision, brain fog.

13. Low-grade fever feeling. I don't seem to get this feeling when I eat gluten (strangely) but when I restrict gluten I get it from many things, e.g. coffee, instant coffee, some teas (tea bags?) - and it seems that I get it 'randomly' too. It generally goes away over time on a very strict diet (described in point 1) but occasionally comes back (maybe accidental gluten exposures bring it on?). Sometimes I can measure a raised temperature (e.g. 37.2 Celcius) with this feeling but sometimes I can't. It feels exactly as if I have a cold coming through and a little bit of fever: body aches, worn out, chills. Also ears ringing. I can't explain it but I do think it's linked to either an infection/ inflammation/ immune system being triggered and again, I've had it for many years and no-one (not doctors or private therapists) seem able to tell me what it is. Someone said it was similar to their chronic fatigue syndrome feeling. My best guess right now is that it's being 'glutened', e.g. green tea bags would give me this feeling every time. I wonder if the 'numb' feeling from gluten masks it, if I eat lots of it, since it seems to have disappeared since I've now eaten lots of gluten every day.

14. When I start eating starchy carbs/ gluten, I find it hard to not eat them too much. I joke with my colleagues that if I let myself eat a slice of bread for breakfast I end up eating bread all day long. I've read that many people are addicted to foods they are intolerant to and I think it seems that way with me. Whether I have celiac or not I do think I'm at least intolerant to gluten. Hopefully, if I'm not celiac, this might be a temporary condition but one nutritionist at least thought that if I have IgG positive test to gluten (gliadin) - which I did - then I should avoid even trace amounts of gluten forever and it can never be healed (even if celiac is not confirmed). Other people disagree with this and say until the NHS blood test (ordered by my doctor) confirms me celiac (or not) then we can't know.

15. There are lots other things going on, chronic fatigue, emotionally sensitive to stress, shortness of breath, social anxiety, etc. but I won't list them all.

16. Many people who know me think I live a very healthy lifestyle. I eat more strict than people around me most of the time, try to exercise (although not enough due to a stressful job requiring overtime), try to spend time outdoors etc. Alcohol seems to help take the edge off many of the symptoms (and stress) and I used to drink a lot but now just drink maybe 7 units per week; and sometimes many weeks/ months go by when I don't drink at all (generally when I'm on a strict diet anyway).

17. Doctors have done lots of tests and found nothing wrong so far. Lots of independent therapists I've seen and Traditional Chinese Medicine doctor did find many imbalances, however. I can explain those if someone thinks it might be relevant to celiac but way too much to explain in this one (giant) post!

I would really appreciate any thoughts anyone might have..

[trents]

Welcome to the forum, Ucat!

Wow! I think you have the record for the longest post on our forum. It's okay, though. Lot's of good information and I'd rather have a lot than not enough when trying to help people.

I hope your short 3 week pretest gluten challenge is good enough. Mayo Clinic recommends 6-8 weeks of 2 slices of wheat bread or the equivalent daily. I would hate to see you have another negative test because you weren't eating gluten for long enough to generate positive antibody levels, especially when you have so many symptoms that scream celaic disease. It might interest you to know that a pretest gluten challenge before an endoscopy/biopsy needs to be only two weeks long. That is the other kind of test that can be done to diagnose celiac disease. The biopsy looks for damage to the small bowel villi.

Another possibility is that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. It is diagnosed by first ruling out celiac disease. Both condition share many common symptoms and the antidote is the same, total abstinence from gluten for life.

Still another possibility is SIBO (Small Intestine Bacterial Overgrowth). Your reactions to almost any kind of carb makes me think about this.

[Ucat]

3 minutes ago, trents said:

Wow! I think you have the record for the longest post on our forum.

You should see the years worth of health diaries I've written to try to figure my symptoms out!

[Wheatwacked]

On 3/13/2022 at 4:51 PM, Ucat said:

Alcohol seems to help take the edge off many of the symptoms (and stress) and I used to drink a lot but now just drink maybe 7 units per week; and sometimes many weeks/ months go by when I don't drink at all (generally when I'm on a strict diet anyway).

After 30 years of uncontrollable alcoholism, one week of gluten free ended my addiction. 8 years later on GFD and I can take a drink for social occasions but generally prefer not to. I had a list of 18 different symptoms that improved with the gluten free diet. Trust the evidence of your health diaries. You might find Dr Fuhrman's books enlightening, a cardiologist turned nutritarian he advocates lots of salads to raise your nutrient levels.

[Ucat]

Thank you for sharing this, very interesting. After trying lots of different diets over the many years, I've come to the same conclusion that Dr Furhman's diet is generally the best. I've never tried a full celiac diet and most of the time ate at least trace amounts of gluten, however.

And it's a good point about trusting the health diaries, I agree, it's so easy to get confused but the evidence is there.

 

 

[Jackie Garrett]

On 3/15/2022 at 9:25 AM, Ucat said:

Thank you for sharing this, very interesting. After trying lots of different diets over the many years, I've come to the same conclusion that Dr Furhman's diet is generally the best. I've never tried a full celiac diet and most of the time ate at least trace amounts of gluten, however.

And it's a good point about trusting the health diaries, I agree, it's so easy to get confused but the evidence is there.

 

 

Hello Ucat

I have had many symptoms like you, I see you still drink alcohol, that is a big trigger in me, have you tried taking that out of your diet ? 

[Scott Adams]

I just want to emphasize what @trents brought up, that ~10x more people have non-celiac gluten sensitivity (NCGS) than do celiac disease, but there currently isn't a test for it. The treatment is the same, a gluten-free diet for life. So you could fall into this group if you don't have actual celiac disease. 

[Ucat]

On 3/17/2022 at 6:01 AM, Jackie Garrett said:

Hello Ucat

I have had many symptoms like you, I see you still drink alcohol, that is a big trigger in me, have you tried taking that out of your diet ? 

Hi Jackie, I drink alcohol on and off. It saps my energy so definitely feel better when not drinking it. I have so many different food triggers for various symptoms...

21 hours ago, Scott Adams said:

I just want to emphasize what @trents brought up, that ~10x more people have non-celiac gluten sensitivity (NCGS) than do celiac disease, but there currently isn't a test for it. The treatment is the same, a gluten-free diet for life. So you could fall into this group if you don't have actual celiac disease. 

If you have NCGS does it mean that you may be able to tolerate a little bit of gluten or do all/ most people still need to avoid even trace amounts?

[trents]

26 minutes ago, Ucat said:

Hi Jackie, I drink alcohol on and off. It saps my energy so definitely feel better when not drinking it. I have so many different food triggers for various symptoms...

If you have NCGS does it mean that you may be able to tolerate a little bit of gluten or do all/ most people still need to avoid even trace amounts?

You would just have to answer that question through personal experience as different people will have different degrees of sensitivity. The safe answer is total abstinence.

[Scott Adams]

Some experts believe that NCGS is a precursor, in some cases, to celiac disease...like a warning sign. I would like to see more research on this, but if true, the best approach would be total elimination so you never reach a point where you end up with full blown celiac disease.

[Ucat]

An update: I've now had my celiac blood test results back and they were negative. I took the test after four weeks of eating plenty of gluten/ wheat.

Previous IgG anti-body test indicated that I have an intolerance to gluten (gliadin), however.

Some symptoms I had previously went away while eating gluten (although other changes happened at the same time: work changes, started taking good iron supplements, etc.) but I also got two new symptoms: slight nausea on and off and occasional stomach pains (not strong). Many symptoms I had previously also stayed, e.g. sinus problems, women's hormone issues, weight gain, bloatedness, feelings numb (as if there is an invisible wall between me and the world), etc.

As a next step I've now ordered stool analysis and SIBO breath tests from Genova Labs. I'm going to go back to gluten-free diet, but it's difficult because I also have to cut out other foods I'm intolerant of (dairy, yeast, cashew nuts, spirulina, brazil nuts, avocado, eggs). I gain weight, become bloated and tired, and feel unwell when I eat cooked starchy carbohydrates so have to limit those (not just grains, root vegetables also). Also I can't eat fructans (one of the Fodmaps) because I get lots of bloatedness from those (so no onions, garlic, many types of beans & lentils, tofu, some veg, some fruit etc.). I'm also a vegetarian but eat seafood. 

Therefore to control all the symptoms I'd have to only eat: fish, green vegetables (not cabbage), cauliflower, ginger, mushrooms, olives, tomatoes, apples, blackberries, apricots, cherries, oranges & mandarins, coconut, grapes, mango, pineapple, strawberries, chickpeas, chia & hemp seeds, many other seeds, tea, coffee. This diet is too restricted and quite possibly not healthy either so am going to eat half-well and wait to see what the test results come back as.

 

[trents]

4 hours ago, Ucat said:

An update: I've now had my celiac blood test results back and they were negative. I took the test after four weeks of eating plenty of gluten/ wheat.

 

The Mayo Clinic recommendation for a pretest gluten challenge is the consumption of the amount of gluten found in two slices of wheat bread daily for 6-8 weeks.

[Ucat]

20 hours ago, trents said:

The Mayo Clinic recommendation for a pretest gluten challenge is the consumption of the amount of gluten found in two slices of wheat bread daily for 6-8 weeks.

Yes, I've even heard three months being recommended. For the sake of my wellbeing and mental health I can't eat gluten for that long - four weeks was the most I could do - I intended to do six but I couldn't do it. Not only does it cause weight gain, bloatedness and other problems, it also causes cravings and low moods. I was hoping I might get some help from my NHS doctor but as usual, they can't help, given all the (limited) tests they do coming back as normal. So back to figuring out my health by myself and paying for a few expensive tests where I can to try to guide me along.

In my view the doctors look for major imbalances and are good at dealing with emergencies. Anyone with long-term conditions may not be helped as much.

My tissue transglutaminase antibodies were as follows: "Tissue trans IgG" was 1.1 u/Ml (below 7 is negative), and "Tissue trans IgA" was 0.2 u/Ml (below 7 is negative). Both are very low compared to the reference ranges, which makes me think that I would have still been negative if I had eaten gluten for longer.

I do think there are different ways gluten can harm you and celiac is only one of those ways.

Alternatively, I may have a problem with fructans (one of the FODMAPs) and cooked starch digestion (suspect a pathogen in the gut, being tested), while gluten itself may be less problematic. However, an Elisa food intolerance test by Yorktest showed that I had high IgG towards gluten (gliadin) so I suppose it's causing at least some harm. I tried to query what their measurement units are (to be able to compare with the NHS test) but they were unable to tell as the machine gives them colour-based results to compare with reference ranges, and results as green, yellow and red. I know these tests are debated whether they show true intolerance or not so that is another confusion to add to the list!

 

 

[trents]

Another cause for negative celiac antibodies can be low total IGA. Apparently, some people's immune systems just give atypical responses to inflammation.

Edited April 26, 2022 by trents

[Scott Adams]

Good call, did they do a total IGA as part of the celiac blood panel? This is considered standard, because some people have low IGA which can skew the tTG results. If you do have naturally low IGA they can do other tests for celiac disease, however, to me it sounds like you already know that gluten is the cause of your issues, which means you have gluten sensitivity, so I'm curious why the need for a formal diagnosis? Around 10% of people have non-celiac gluten sensitivity (NCGS), which cannot be diagnosed yet via testing, while only ~1% have celiac disease. 

[Wheatwacked]

Herbal antimicrobials such as oil of oregano and berberine may work in the same way as Rifaximin and are commonly used in functional medicine as they may be gentler on the system.

What Is Hydrogen Sulfide SIBO and How Is It Treated?

[Ucat]

On 4/26/2022 at 2:30 PM, trents said:

Another cause for negative celiac antibodies can be low total IGA. Apparently, some people's immune systems just give atypical responses to inflammation.

Thank you for this insight, I've requested this test from my doctor and waiting to hear what he says.

[Ucat]

On 4/26/2022 at 5:47 PM, Scott Adams said:

Good call, did they do a total IGA as part of the celiac blood panel? This is considered standard, because some people have low IGA which can skew the tTG results. If you do have naturally low IGA they can do other tests for celiac disease, 

Thank you for the information. I've requested this test now, fingers crossed they will do it. As far as I can tell it hasn't been tested for yet.

I've just now also had my stool and SIBO tests back from Genova Labs. The results are as follows:

- The test was positive for SIBO. (Wondering what has caused this and what is it that is overgrowing...)

- No parasites or infectious bacteria detected.

- No growth of lactobacillus bacteria at all but other beneficial bacteria levels were fine. (I've taken lots of lactobacillus probiotic recently and over the years so very surprised they haven't established themselves. Perhaps the terrain is damaged and they can't grow but other bacteria seems to grow fine... Possible gluten link?)

- Moderate yeast overgrowth. 

- Some undigested foods in the stool. (Wondering if this is normal and if not, what is causing it.)

So now it's a case of figuring out whether these are linked to gluten/ wheat or not (NCGS?) and what to do next. Am booking a consultation with a Nutritionist.

[Ucat]

On 4/27/2022 at 3:17 AM, Wheatwacked said:

Herbal antimicrobials such as oil of oregano and berberine may work in the same way as Rifaximin and are commonly used in functional medicine as they may be gentler on the system.

What Is Hydrogen Sulfide SIBO and How Is It Treated?

Mine appears to be a methane SIBO, not hydrogen...

[Scott Adams]

Let us know what you find out, especially regarding the total IGA. 

[Ucat]

7 minutes ago, Scott Adams said:

Let us know what you find out, especially regarding the total IGA. 

I will, also worth mentioning that one registered nutritionist and functional medicine practitioner offered this advise, which I find very interesting, regarding celiac/ NCGS:

"...if you want a thorough comprehensive gluten / Coeliac test, the go-to test is Cyrex Array 3X.  We find positives to gluten/wheat in many patients whose standard coeliac test has showed negative.  Immune reactivity to wheat/gluten really can’t be ruled out on the basis of a standard coeliac test.  Just to be aware!"

I think I'd have to eat gluten again before taking that test, however, and am a bit out of funds at the moment too... That test seems very expensive at GBP £375 from the practitioner I spoke with... not sure if others offer the same cheaper...

[Scott Adams]

On some level it may just make sense to stay gluten-free, and if your symptoms mostly or completely go away, it means that you're on the right track...no extra money spent beyond the extra cost of gluten-free foods. If you still have some symptoms you could then keep a food diary and see if you find another intolerance, for example oats, cow's milk, corn, etc.

[Ucat]

1 hour ago, Scott Adams said:

On some level it may just make sense to stay gluten-free, and if your symptoms mostly or completely go away, it means that you're on the right track...no extra money spent beyond the extra cost of gluten-free foods. If you still have some symptoms you could then keep a food diary and see if you find another intolerance, for example oats, cow's milk, corn, etc.

Yes, I agree. And I have found other intolerances too. I'm trying to find the root causes of my problems and symptoms, however, because there are so many things that I can't digest and I have to find a way of strengthening my system. Even while eating a good gluten-free, grain-free etc. diet I still want to fix any underlying imbalances too and strengthen my system. While gluten-free helps a lot I still always have surprise symptoms that make no sense. Celiac would have explained other digestive problems (due to destroyed villi) and given some hope that those will fix themselves over time, as long as I stayed gluten-free...

I'm now thinking of starting a chart where I log all health benefits I get while eating a good diet so that I can see (and remember) the progress. Then I can also see how I backtrack if I veer away from the diet. That should help me stay on the diet and keep focused without forgetting all the symptoms that come on a bad diet...

Properly understanding the root causes of the problems would help me stay focused and motivated.

[Ucat]

I've now spoken with my doctor and requested the total IgA blood test. They only have 5mins per patient these days so she was very rushed and said that if I didn't have any IgA I wouldn't have any saliva or other body secretions. She thought the blood test was unnecessary and if she ordered it the lab would reject it. Apparently rheumatoid and autoimmune tests they've done previously would have shown if I had any autoimmune problems. I'm not convinced this is correct but she was getting annoyed with me trying to ask further questions so I gave up. Not sure if there is a way to do this test privately somewhere... It's a shame I didn't do the Genova Labs celiac profile test at the same time as doing the celiac blood test with the NHS. Now I haven't been eating gluten anymore...

Regarding the IBS Nutritionist - She recommended a low FODMAP and low sugar diet and three anti-bacterials to kill off the overgrowing bacteria/ archaea in the small intestine: Oregano oil, Allimed (garlic with fodmaps removed), and Berberine; all rotated. After a four-week course we'll find out if it worked. She thought the (methane) SIBO might be causing the carbohydrate intolerance and might also be linked to the yeast. I'm changing the diet a bit based on my previous experience of what reduces my symptoms... I won't eat starchy carbs or dairy but will probably be a bit more free with eating fruit. The important thing, she said, is also to not snack between meals because it stops the migrating motor complex (MMC) from working. She thought the underlying cause of these problems was stress, which causes low stomach acid and slow MMC. Food poisoning could also have caused it.

I've bought the new Food Marble Aire 2, which is a home breath test measuring both methane and hydrogen gases, so I can test food by food (one each morning) what causes gas and what doesn't. Anything that causes gas within the time limit would have fed the bacteria/ archaea in the small intestine. Once I've completed the four-week antibacterials course I can then test again to see if gas is not forming anymore, i.e. if the antibacterials worked or if I need a longer course.

In addition I will keep avoiding the foods that were indicated in the IgG tests (Yorktest, uses Elisa testing method) to be intolerances, including gluten, cow's dairy, yeast, cashew nuts, brazil nuts, spirulina and avocado.

There's a lot more I could write but I'm going way off the celiac topic so realise this may not be that relevant... I've heard that Celiac can be linked to SIBO too, so perhaps it's still related; and in my case, I will assume for now that I have NCGS and if I ever start eating gluten again for any reason (and if I still have/ if it still causes symptoms), I will then try to do the expensive and more thorough Genova Labs tests for all different antibodies (includes total IgA also).

Once the SIBO and gas is eliminated I will see if I feel better and what symptoms remain, and plan from there what to do next. Logical next steps would be to eradicate the yeast overgrowth and try to replace the missing lactobacilli bacteria in the large intestine. Some of the antibacterials kill yeast also, however...

[trents]

There are home test kits available from different companies to test for celiac IGA anitbodies: https://www.imaware.health/at-home-blood-test/celiac-disease-monitoring

I believe there are other companies besides Imaware that offer these. But again for the tests to be valid you must be eating significant amounts of gluten daily for a couple of months before testing.