1. Is it possible to test for leaky gut, I have googled and searched and I am not clear
a) if it is useful ?
b) which test is best ?
c) I am thinking this is how gluten affects me as I did not have Celiac antibodies when bloods tested
2. Lymphoid Hyperlasia LH- had colonoscopy today.
Clear and healthy gut (phew) but this LH was flagged up. Any advice ?
I will see Gastro in a few weeks
"Lymphoid Hyperlasia throughout most of colon". Inflammed lymph nodes is what was explained to me.
Google says "LH of the gastrointestinal tract is characterized by the presence of multiple small nodules, normally between between 2 and 10 mm"
Background
After a few months on Levo my underactive thyroid symptoms seem better. Feel generally much better but my guts have taken a turn for the worse for say 6 weeks. bloating, loose etc.
I have been gluten free for 1 year ~4 months as had runs and symptoms of Celiac disease.
A test eating gluten a few weeks ago knocked me backwards. So nothing has changed with gluten
Saw NHS Gastro in November after over a year waiting. They set up CT scan, colonoscopy and stool samples. I will talk to consultant in a couple of weeks or so to go through all the results.
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I have been gluten free for 1 year ~4 months as had runs and symptoms of Celiac disease.
A test eating gluten a few weeks ago knocked me backwards. So nothing has changed with gluten
it will probably take 3-4 months to recover from eating gluten
presumably you have Hashimoto’s (autoimmune thyroid disease) usually confirmed by high thyroid antibodies (or if antibodies negative by ultrasound scan)
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet should help reduce symptoms, help gut heal and may slowly lower TPO antibodies
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too.
Approx 50-60% with Hashimoto’s find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Both dairy and gluten are considered inflammatory foods
Thank you SD. Yes Hashimoto's. I am generally OK GF but it is a bit of a pain for the family and eating out. Dairy Free might be the next trial. Again thanks
I don't know that there is a test for leaky gut and many Gastoenterologists likely don't even believe in it.
Many people with Hashi's don't have Coeliac antibodies yet do better without it. Have you tried eliminating dairy as thats next most common intolerance?
It's good that you're getting all this checked out but often nothing is found. Should that be the case then have another look at your thyroid results & vitamins. Also consider the low FODMAP diet.
Thanks so much Jaydee. I will try stopping dairy. I will read the FODMAP stuff.
I will keep going at vitamins (B Complex and vit D spray)
I am doing thyroid bloods in the morning with Monitor my health.
Gut is no where near as bad as the start of my journey but just making sure it is nothing more serious. The nerve damage from Celiac disease was a shock, so I will keep trying to find root cause.
Colonoscopy closed out a lot of possible issues. I will post what the consultant comes up with in a few weeks,
When you say tests were negative....do you mean for coeliac? You can be gluten intolerant. To test that requires specialists test which are only available in two specialist Ataxia centres in England. One in Sheffield, other in London.
So it's quite possible to be gluten intolerant but not a coeliac.
Now you reintroduced it will take several months to heal following removing it. Poor you....lol. I had to follow a diet that avoided irritants like coffee for about 9months. Hope you feel better soon
Hi thanks for this. Yes celiac blood test was negative. I think my fried fish and bacon butty test a few weeks ago confirms to me I am gluten intolerant. Hopefully that one indiscretion/trial does not take too long to heal.
I am strictly gluten free normally and very careful. I am looking at the FODMAP diets .
My guts were already not good for quite a few weeks before ... about the time my levo kicked in and got TSH down and actually starting to register some T4. Maybe my digestive system has energy to repair itself now and that is causing some inflammation etc.
It took me ages to recover. I had ended up on soup....all I could eat & not much of that. A leading neurologist told me when I finally saw him nearly 2years later that I have the gene for coeliac. That I have mild brain damage to my cellubellum all fitting with gluten intolerance. This was at the specialist Ataxia clinic. If you look on Coeliacs uk website there is a video of him giving a talk about it.
Anyway hope you find the source....as it sounds like you may have another sensitivity on top..poor you. X
So was the gut symptoms from taking Levothyroxine, could it be sensitivity to a filler in this drug, have you changed brands or dose of Levothyroxine?
As many already said not everyone shows antibodies for coeliac disease and small percentage are IgA deficient (check coeliac U.K. regarding information on what they are testing) and if going gluten free (gf) helped then I’d continue, but do make sure you’re getting all nutrients back in diet, as gf isn’t a healthy diet if solely relying on the free from aisle in shops (and expensive) there’s many additives added to food to make them resemble and taste ok and where gluten flour cereals etc are regulated and have added vitamins manufacturers don’t have to add anything to gf food, so deficiencies can occur if not adding these back into your diet.
Pasta I buy really is the only regular item I buy and I try to make that a better choice and get more nutrient dense types, and just do without bread other stuff or make my own, then I know what’s in it. There’s lots of naturally gf food to switch to.
A gastroscope might be worth asking for if diagnosing coeliac disease but usually these are done if some positive antibodies for coeliac disease. Given you’ve been gf a while it might not show anything regardless.
There’s dna tests but you probably won’t get that done in NHS and although you can have theses genes doesn’t actually mean you have the condition, it requires switching on and various things do that, but it’s more likely if you’re showing symptoms.… there are places that test these… Life code GX is a good one and for thyroid tests also but very expensive but is a well regarded company I’m told.
Coeliac disease isn’t just a digestive disease it causes numerous other symptoms nip on to coeliac U.K. for more information.
It can take months for any ingested gluten to clear I’m told … I’m coeliac (for over 10yrs) I had extremely high antibodies they couldn’t count so high took years to become negative, I had positive scope too although gastroenterologist could clearly see beginning of scope I was coeliac before results came through …I had no digestive symptoms of Coeliac disease, I rarely get upset tum, it was found investigating something else…there’s many silent coeliacs out there struggling with other things and once you have a known autoimmune condition it’s worth looking at regardless if you have no symptoms and definitely before embarking on going gf.
I wouldn’t omit anything else in diet until you’ve seen your gastroenterologist and talked to him he may give you appointment with dietitian to rule out other sensitivities and maybe even more testing and you don’t want to get any false results by taking things out or adding things in your diet before any testing.
Re Lymphoid Hyperlasia (LH) did they take biopsies do you know when you had the scope?
I assume gastroenterologist will tell you once they’re tested, and what next steps are if any, I don’t think it’s worth speculating until have all results, (if you had biopsies) as from briefly reading up LH at a colonoscopy it can be a frequent finding, it can be caused by many things including , IBS, sensitivities/allergies, viruses, bacteria, colitis and anemia etc.
Hope you don't mind me replying to you Coelic Mum1.....just picking your brain on deficiencies through a gluten free diet. Interest to know what you do. My neurologist referred me to a dietician but that was 2yrs ago.....still not heard anything!! Obviously my diets much better since going strictly gf....as can eat whole meals now! I do eat gf cereals & somevgf bread but mot that nothrred by gf bread. As I have b12 jabs I do take a general b12 complex with folate to support me. Be grateful to know if there's anything more I should be doing or thinking about. Thanks
I have B12 jabs as I have pernicious anaemia and take vitamin D3 with K2.
I’m starting B complex and magnesium (my choice) after finished getting my results from endocrinologist in March regarding my thyroid (I have Hashimoto’s, positive TPO antibodies only) adrenal and glucose irregularities at moment add in peri menopausal 🤦🏻♀️ … possibly add Vit C zinc and selenium, but still looking into this.
Dietitian re coeliac diagnosis was mostly concerned with all B Vits, iron, fibre & calcium. I had to omit gf oats until my coeliac level started to reduce it took some time, then added them back, some can’t tolerate gf oats whatsoever, some can have lactose problems initially too but again can usually add dairy back I remember her saying in most cases.
Gluten flour, breads and cereals are fortified but there’s no regulation to fortify gluten free flours, cereals and breads although some manufacturers have done more recently I’ve noticed. So we aren’t getting the extra B vitamins mainly. Cutting back on grain choices can cause us not to get enough fibre too. As with many autoimmune disorders many suffer with Vit D and iron deficiency too.
All my levels were looked at, my calcium was good others not good, so over last decade ups and downs with iron & folate, although iron is much better but folate keeps fluctuating 🙄 it’s only marginally out at times but for thyroid / autoimmune disorders we need this in much better than just in range, which NHS again won’t supplement if in range well not very often.
Luckily I had same dietitian I saw privately 10yrs or so ago as I did more recently in 2020 through lockdown so I’m amazed you’ve not been seen, mine was only a phone call in 2020 though, with blood tests beforehand and followed by another blood test after supplementing, and it was regarding folate, although I do eat a very good diet rich in folate I don’t go heavily on booze well within guidance levels (it’s known to deplete) or cook things to death again another way we can deplete folate, but this is still an area I struggle with. Saying all this I do think an accredited nutritionist can give better advice (regarding micro management of these things), but not one who has just done few online courses which anyone can do and call themselves a nutritionist, unfortunately this area is a bit sketchy and why dietitians are used more often in NHS but to get the finer details I do think nutritionist are more on the ball…mostly due to NHS guidelines and teaching methods and taking methyl folate rather than folic acid, I’m told is better… unfortunately my dietitian couldn’t advise on this, as they told to give folic acid. I don’t think methyl folate supplements have been tested for birth defects, but only what I’ve read so do check that yourself, I assume that is why NHS don’t prescribe it, quite bizarre as it’s natural and many of us will have MTHFR gene mutation and don’t do well on folic acid… an area I’m interested in at moment is the methylation and detoxification process.
Thanks. I buy Thornes Basic B with folate. Feel much better on it. I take vit D with K2.... Maybe Ive not seen dietician yet because though I've got the coeliac gene am down as gluten intolerance. Just been diagnosed with Essential Tremor (tremors started 15yrs ago...lol) am waiting for my appointment with Neurologist to discuss (sent me a letter with diagnosis) but won't be till August. Everything moves very slowly on the NHS but my Neurologist is very thorough & I like him. I know I have damage to my cerebellum which he said was a typical pattern that they see with gluten intolerance but dont know if its what caused the ET yet. I'll ask about dietician when I see him. Sounds like my diets probably pretty on tract. 🤞🤞B12 jabs have made a massive difference. My b12 was in range but low 230, despite supplements, tested negative twice for intrinsic factor.....but give how frequent I have to inject dont think I can state B12 anymore.
It's all a pathway of discovery......buy am pretty sure I've got to the bottom of what caused my CFS/ME symptoms now!!! 🤣
You can still have Pernicious Anaemia (PA) and test negative for intrinsic factor… my B12 was double figures in 2012 my vitamin status was dire in many areas, amazing I was ok until boom a disc bulge hit spinal cord, it caused neurological problems (mostly resolved) … although my levels are great now even at point of my next jab without them I know they drop, I don’t hold on to it, as a surgery error early on in 2013 left me without jabs after the loading dose, then 6 months without jabs and then deficient again, they had me down as just bumping levels apparently 🙄. My gastroenterologist saw my levels dip as I saw him for 2yrs as my levels took 9 months to dip another year or so to become negative, and now I’m tested annually for my nutrient status and coeliac with B12 injections in place every 3 months.
Gluten Ataxia, I think your neurologist is on about it was mentioned to me by my orthopaedic consultant before we saw that the thoracic disc bulge was seen on mri and my gait was erratic and had neurological problems with tingling and burning sensation left side, and foot drop on right but was put down to the bulge hitting spinal cord… luckily resolved itself but took couple of years… bulge stopped my bowels working hence finding I was coeliac & had hypothyroidism (Hashimoto’s) & PA.
Did you get a loading dose for B12 before regular jabs?
Yes you sound you’re covering most areas re gluten diet, that’s good 😊
Thank you both so much for sharing, I have learned so much from your discussions.
Good luck Waveylines
I am now generally well and "vital" again. My
I looked at a video from Sheffield on Ataxia,(could not find Celiac UK one) a couple of young sufferers explaining it and was holding back tears. (at my thyroid low/TSH high, I would have been blubbing) It seems there are many types and gluten ataxia is one of them.
My learning from Waveylines and CoeliacMum1 discussions and some reading:
1)Autoimmune conditions are not well handled by NHS and we need to be more careful of our own health. They are difficult and complex. You end up needing to be a lot more careful with health and symptoms. Uuuggh.
Thank goodness for the kind people on here sharing learnings.
I had to push for thyroid antibody test to find out why I had an underactive Thyroid.
When diagnosed, it did seem like " OK so underactive thyroid - Easy - just take levo for rest of your life and a blood test once a year"
2)Vitamin B12 levels being good/high is so important for neurological AI symptoms. Same for Folate and D3
3) If neurological symptoms (NS) of gluten issues then need to be very careful if you take gluten, can make things worse and may not recover. Can take months to recover. I wondering exactly what NS covers :brain fog, numbness in toes, pins and needles etc.
4)Leak gut tests do not seem to be a thing for finding out about gluten intolerance
5)There is a blood test for gluten intolerance/non celiac gluten sensitivity
TG6 test checks for the presence of the anti-transglutaminase-6 (TG6)
from/developed by Ataxia Clinic in Sheffield. Ataxia is a disease not a company! I will ask the Gastro consultant about it.
6) My adult daughter has vitiligo (different pigment patches on her arms from birth). This is an autoimmune condition. She tested clear on Celiac blood test. I will chat with her.
7) Lymphoid Hyperplasia - lymph node swelling in colon does not seem widespread. I will see what consultant says.
Phew, exhausting and I am pretty well at the minute.
Thanks Coeliac Mum. Gosh that disc bulge sounds scary. Is everything resolved now including bowels?
Yes am lucky the neurologist I have is very aware of impact of neurological damage from gluten. He has lead the research in the world. I initiated injecting b12 myself, alternate days, then every day wasn't prepared to wait 7months for the first neurologist to see me. Luckily neurologist agreed with me though he was very arrogant & initially wanted me to pay for b12 jabs myself to save the nhs!!! Had to swallow my anger & be prepared to beg....which I did - focusing on outcome not the degradation of having to beg! Don't see him anymore thankfully.
However I've had to inject twice daily for about 2 yrs now to stop symptoms back tracking. I buy the extra b12.....can't face another battle.
My current neurologist is lovely. I'd Been GF for 18months by the time I got to the top of the queue. Not prepared to reintroduce gluten for fear of more damage but he can see it from my brain scan.. I'd hoped that going gf would mean that after a couple of years I could reduce stop b12 jabs, assumed it was damage in the gut from GF.....but no not the cause. I have Vitilgo universal - all my health problems lead back to that! Lol ....they used to think Vitiligo was harmless....views have changes now.
Hope you carry on being well.....& that disc doesn't cause you any more problems.
Thank you so much. I am so much better overall now on levo as well as gluten free. I do not want to ignore my gut though in case some other AI damage is happening. I guess I am wondering if Gluten Intolerant means more likely to be intolerant to other foods like dairy, as it is a different way of being battered by gluten than having the antibodies.
Re Levo type. I am on accord. For first 6 weeks it was Teva. I write something up each week on how I am and what is next etc. ... I will check back.
I am fine on gluten free and we eat well at home a bit of a pain when going out to eat. I now tell people not to buy GF cakes and bakery stuff specially for me before visiting.
I completely agree about the GF products being a non too healthy chemical soup. I was reminded as I had some GF bread for the first time in ages this week, as I had to go low fibre for my Colonoscopy clear out.
The pre colonoscopy "clear out" will have sorted out any gluten that is not in my blood stream !
My Mum is Celiac and hypo (20 odd years) - gluten does not affect here digestion too much either, like youself. Her damage was deep down and they missed it on the first endoscopy.
Yes they did take biopsies. Your thoughts on waiting for results and consultants view and possibly seeing dietician all make good sense. I have a worry list of dairy, alcohol, histamine and yeast.
I think I have been OK on coffee and mostly drink weak black tea and hot water anyway.
I will get bloods done by GP in a month or two and I will see how vitamins have recovered from B complex and vit D boosts. I am doing a post in thyroid set on Monday.
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