Reintroducing gluten for celiac test, your symptoms, did they change? Did any allergies improve? Did SIBO improve?

[rowanie]

Good evening everyone, thanks for reading this post. 

A bit of background about me...

I’ve had problems for around 20 years, but everything got really bad around the time I got pregnant 8 years ago. I started getting things like bloating, my small intestines move my tummy up and down, excessive wind, abdominal pain, migraines up to 5 days a week, balance problems, feeling/being sick, depressive, anxiety, acne, itchy blister like rash on feet, hands and face, heartburn, joint paint in hips and back so bad I often can’t stand up for long or can’t stand up straight. I have tingles in my hands and feet and legs. I have a shooting nerve pain from my head/neck down my arm. Heart goes fast & heart palpitations, I can swell up. Struggle breathing. Constipation and diarrhoea. Mucus in stools. Tinnitus.  Stomach aches. Brain fog. Tired. The list goes on. 

Last year I couldn’t take anymore and as I was fed up with feeling so sick all the time. The NHS told me I was lactose intolerant, but I never felt better, so I paid to see a Dietitian, who is incredible. She told me to give up dairy and soya and I instantly started feeling better. She said I had an dairy and soya allergy. 

Fast forward 10 months and I still had the underlying problems with wind, bad abdominal pain, bloating, acne, blistery itchy rashes, (my face was completely out of control with this strange red/blistery rash) migraines just ones a week (I feel I am blessed in comparison to what I was), heartburn, stomach aches, stomach moves up and down, balance problems, tingles in my hands and feet, stabbing nerve pain from neck to arm, tinnitus, joint problems, mucus, depression, heart palpitations, sleep problems, feeling too hot or too cold.

I have recently been told I have SIBO (small intestine bacteria overgrowth). 

I have been on the low FODMAP fruit and veg diet, which did nothing. By pure accident I took out wheat from my diet and suddenly realised I was feeling better, so my dietitian told me to go gluten free, which I did for 5 weeks. My skin had never been so clear. My face looked different. Stomach stopped bloating, wind improved, the inflammation from my back ache/hip joints improved, but the hip pain is still there, depression lifted, heart palpitations gone, felt so energetic and happy, heart burn and balance problems gone. 

I then decided to go back on wheat as I want to get tested for celiac, which I am on the waiting list for. I am in the UK, so it could be a very long wait. I have now been gradually reintroducing it for 3 weeks. Going back on gluten, everything has come back, except my wind and abdominal pain isn’t as severe (not everyday anyway, but maybe every other day). My balance seems better. But everything else is there, acne, itchy rash, terrible joint pain (I have just had an X-ray to test for osteoporosis and am having bloods to test vitamin levels and for arthritis), mucus in stools, sometimes they float, I have this weird thing where I can see my small and feel intestines moving about. I have videos of my stomach doing the Mexican wave, it’s like I am pregnant. I’m irritable and depressed, heart palpitations back, feel tired, heart burn back, urgency for toilet back, tingling in hands and feet never disappeared. Because my stomach doesn’t seem quite so severe, I started wondering if my dairy and soya allergy may have disappeared. I’ve had a tiny bit of Clover butter and been ok. Now I can’t decide whether to try other things.

I am also being tested for inflammatory bowel disease as I had blood in my stools at times along with the mucus. I think that will be negative though. 

I’ve had 20 years of feeling rubbish, eliminating this that and the other during the course. Could 5 weeks of gluten free have cured my SIBO, dairy and soya allergy and gluten problem? 

I want to know what experiences you had if you accident had gluten or tried reintroducing it. Was it a slow downhill process or instant and what were your symptoms? Was it all GI or other symptoms? I read that everyone is different, but I’d rather hear from real people.

I don’t want to obviously have an endoscopy/bloods if I don’t need to, but I also don’t want to continue not knowing. My brother has similar problems and I have also watched my mum have problems over the years (although she wouldn’t say anything). My little girl who has just turned 5 always makes me think as she’s always got such a pot belly. She’s tiny, always been very skinny, with a pot belly. She has soooo much wind all the time. She always needs the loo, but often it’s wind and her stools can be quite explosive.

Thank you in advance for reading this, I really appreciate any advice.

Edited June 10, 2019 by rowanie

[Ennis-TX]

First thoughts, sounds like typical celiac for your and the child. Child should be tested while still on gluten, at least blood test. Blood and mucus in stool sounds like my Ulcerative Colitis I got in addition to celiac, it has it's own set of triggers, for me this includes gluten, fructose, glucose, spices, soy, and some other random things.

Intially going gluten free and getting glutened for me it was heavy bad on set, first few times I would go hyde mode with extreme confusion, brain fog, mental issues, and anger, vomiting, and constipation one instance of motor control loss. About a year in it changed to diarrhea, less hyde mode anger, and more gluten ataxia with full body control loss, brain fog, numbness/tingling, bloating, cramps, distention.

I think many issues were compacted by a rested and full strengh immune system finally fighting full strength when it saw the enemy again. And early issues were also when my gut was more damaged so absorbing magnesium (nerves, and gut issues), B-vitamins, and vitamin-D where a issue.

[rowanie]

10 minutes ago, Ennis_TX said:

First thoughts, sounds like typical celiac for your and the child. Child should be tested while still on gluten, at least blood test. Blood and mucus in stool sounds like my Ulcerative Colitis I got in addition to celiac, it has it's own set of triggers, for me this includes gluten, fructose, glucose, spices, soy, and some other random things.

Intially going gluten free and getting glutened for me it was heavy bad on set, first few times I would go hyde mode with extreme confusion, brain fog, mental issues, and anger, vomiting, and constipation one instance of motor control loss. About a year in it changed to diarrhea, less hyde mode anger, and more gluten ataxia with full body control loss, brain fog, numbness/tingling, bloating, cramps, distention.

I think many issues were compacted by a rested and full strengh immune system finally fighting full strength when it saw the enemy again. And early issues were also when my gut was more damaged so absorbing magnesium (nerves, and gut issues), B-vitamins, and vitamin-D where a issue.

Thanks for replying Ennis_TX, I really appreciate your thoughts. It’s been driving me mad trying to work things out. It’s so nice to get feedback from real people. Interesting to hear your symptoms changed. 

[cyclinglady]

Hi! 

I know the waiting list for an endoscopy (NHS) can be very long (months), but are you saying that it takes that long for a celiac blood panel?  Your local GP should be able to test you once you have completed a gluten challenge 6 to 12 weeks.  

Going gluten free if you have celiac disease will heal the small intestine.  Lactose intolerance and other food intolerances (e.g. soy or corn) can also resolve on a gluten free diet because the small intestine heals.  

I do not think five weeks on a gluten-free diet would cure SIBO.  Usually antibiotics are required and a special diet.  SIBO is very difficult to resolve.   How was your SIBO diagnosed?  

You may have celiac disease.  Please ask your GP to order a celiac blood test.  If positive, see a Gastroenterologist.  

Take care.  

[rowanie]

2 hours ago, cyclinglady said:

Hi! 

I know the waiting list for an endoscopy (NHS) can be very long (months), but are you saying that it takes that long for a celiac blood panel?  Your local GP should be able to test you once you have completed a gluten challenge 6 to 12 weeks.  

Going gluten free if you have celiac disease will heal the small intestine.  Lactose intolerance and other food intolerances (e.g. soy or corn) can also resolve on a gluten free diet because the small intestine heals.  

I do not think five weeks on a gluten-free diet would cure SIBO.  Usually antibiotics are required and a special diet.  SIBO is very difficult to resolve.   How was your SIBO diagnosed?  

You may have celiac disease.  Please ask your GP to order a celiac blood test.  If positive, see a Gastroenterologist.  

Take care.  

Hi cyclinglady,

Nice to hear from you. So my SIBO was confirmed after doing a hydrogen breath test at the BRI in Bristol. That test makes you bad for days. I’m not sure I am cured from that, but wondered if giving up gluten would fix it. It was confirmed on the 18th April, but I’ve still not spoken to anyone about the results or treatment nearly 2 months on. I have nothing booked in to discuss them either. It took a year and a half of nagging to get my gastro man to send me for it. As far as gastro are concerned, they told me I have IBS and lactose intolerance. In fact they were really unsettlingly rude at my last appointment. I have been confirm privately, with a very well respected dietitian that I have a dairy and soya allergy as my symptoms are too severe for an intolerance. She’s amazing. I also have a problem with eggs  

I understand bloods are earlier. I’m sure I was tested before I had my children and it was negative and the gastro man tested me about a year ago and I told him I was on a gluten free diet, but he said he would do it anyway and it came back negative. My worry is that I will come back negative, but I may be one of those people that does. Then that’s the end of the road. Would be nice if you could get the full celiac panel in this country. I really want to get to the bottom of this now as nearly 20 years of symptoms is wearing me down. 

Just feel like the NHS don’t care and just think you’re a joke. I don’t know whether going privately would mean you get a more thorough look at things or if it’s just the same as the NHS, but quicker. 

[cyclinglady]

If you remain on a gluten free diet, it may help with SIBO, but it may not.  You might want to do a forum search on SIBO and see advice from members who have had SIBO.  

Whatever happens, it sounds like remaining gluten free/SIBO diet might be best for you.  Consider getting your child tested.  I know my house is gluten free and my daughter who does not have celiac disease is very gluten light (gets gluten access at school).  Best to test before making dietary changes as you already know.  

Again, food intolerances are common with celiac disease and maybe for SIBO.  Those often resolve with healing.  Consider the UK forum for advice on how to navigate the NHS system.  They may even have doctor recommendations. 

I wish I could help your more.  

[rowanie]

2 hours ago, cyclinglady said:

If you remain on a gluten free diet, it may help with SIBO, but it may not.  You might want to do a forum search on SIBO and see advice from members who have had SIBO.  

Whatever happens, it sounds like remaining gluten free/SIBO diet might be best for you.  Consider getting your child tested.  I know my house is gluten free and my daughter who does not have celiac disease is very gluten light (gets gluten access at school).  Best to test before making dietary changes as you already know.  

Again, food intolerances are common with celiac disease and maybe for SIBO.  Those often resolve with healing.  Consider the UK forum for advice on how to navigate the NHS system.  They may even have doctor recommendations. 

I wish I could help your more.  

Hi cyclinglady, you are so helpful. Just talking to someone is enough to make you feel you are being listened to. I didn’t realise there was a UK forum. I’ll see if I can find it on here in a jiffy. 

[cyclinglady]

I know!  Just having a place to vent is so nice.  Most of us have been brushed off by medical staff throughout the years and labeled as hypochondriacs.  It is nice to have a diagnosis, but often that is not possible.  For example, I am diagnosed celiac, but my hubby is not.  He went gluten free 20 years ago before most American doctors were aware of celiac disease (or though only children had it).  He refuses to do a gluten challenge and I can not blame him.  We know gluten makes him sick.  My diagnosis has helped my daughter get tested twice, if that helps you fight for your own diagnosis.  But in the end, feeling better is what counts.  It sounds like your dietician has been helpful.  

[Crispy chick]

Hi. I am UK. I test negative on the standard UK blood test. I have recently had an endoscopy and biopsies and am awaiting the results. Keep pushing. Even if you get negative bloods, push for that endoscopy. 

I felt like crying when in with the gastro who declared he did not think I was celiac and did not think there was anything wrong with my stomach (which has very tender points) but I focused on the end result - he agreed my endoscopy. Turns out I have gastritis with erosion and polyps - hence the tender points he said were 'nothing'. I can only assume that the NHS is so busy that they don't have time for those of us who don't fit the checklists. Very frustrating. 

I was told my endoscopy would be 12 months away. But they are using catch up lists and I got offered any appointment in a different area on a sun. Not sure if you get a quicker service with a positive blood? 

Keep fighting. You know you are not right. X

[rowanie]

1 minute ago, Crispy chick said:

Hi. I am UK. I test negative on the standard UK blood test. I have recently had an endoscopy and biopsies and am awaiting the results. Keep pushing. Even if you get negative bloods, push for that endoscopy. 

I felt like crying when in with the gastro who declared he did not think I was celiac and did not think there was anything wrong with my stomach (which has very tender points) but I focused on the end result - he agreed my endoscopy. Turns out I have gastritis with erosion and polyps - hence the tender points he said were 'nothing'. I can only assume that the NHS is so busy that they don't have time for those of us who don't fit the checklists. Very frustrating. 

I was told my endoscopy would be 12 months away. But they are using catch up lists and I got offered any appointment in a different area on a sun. Not sure if you get a quicker service with a positive blood? 

Keep fighting. You know you are not right. X

Hi crispy chick, thanks so much for your reply. It’s so nice to hear from someone who has found it hard to get answers. Well done for sticking to your guns. I’d love to hear what your results come back as. I’ll keep trying. I have a doctors appointment tomorrow so will see if I get anywhere with that. I hope your managing to get some help for your gastritis. 

[Crispy chick]

6 minutes ago, rowanie said:

Hi crispy chick, thanks so much for your reply. It’s so nice to hear from someone who has found it hard to get answers. Well done for sticking to your guns. I’d love to hear what your results come back as. I’ll keep trying. I have a doctors appointment tomorrow so will see if I get anywhere with that. I hope your managing to get some help for your gastritis. 

Not seen anyone about my gastritis yet ?.

Your gp can actually refer you for endoscopy too. Perhaps you could push them rather than wait for gastro?? My situation has been a catalogue of errors from start. Unfortunately, in my experience, the more experts you are seen by, the more they use it against you and assume hypochondriac!!! Very frustrating. 

The gastro asked me why I had never tried a gluten free diet before (my sis is celiac). Erm.... Because my blood test was always negative and, until very recently, for that reason, I had never read up on celiac ?

Good luck tomorrow. Hard to believe no one tested your blood before you went off the gluten. So simple. 

[Ennis-TX]

Going back to the SIBO, there is a very specific diet for it, where you avoid all carbs, remove all sugars/starches (fruits, potatoes, etc) avoid certain veggies. Essentially a specific food list version of a keto diet to starve the bad bacteria and get them in check. Depending on type of gut flora some us certain probiotics to get the good bacteria to set instead after awhile. I did not have SIBO but I had Candida some time ago, and it uses the same dietary principle to starve it.

[rowanie]

21 minutes ago, Ennis_TX said:

Going back to the SIBO, there is a very specific diet for it, where you avoid all carbs, remove all sugars/starches (fruits, potatoes, etc) avoid certain veggies. Essentially a specific food list version of a keto diet to starve the bad bacteria and get them in check. Depending on type of gut flora some us certain probiotics to get the good bacteria to set instead after awhile. I did not have SIBO but I had Candida some time ago, and it uses the same dietary principle to starve it.

Thank Ennis_TX. Before I went gluten free, my dietitian put me on the low fodmap fruit and veg diet, but I seem to be able to eat any of these without any problems and I didn’t feel any better on this diet. You can feed me onion all day long and I’m fine strangely. What then happened is that I accidentally managed to not eat any gluten. 4 days went by and I suddenly was feeling better. That’s what made me test out going gluten free. My dietitian said that she doesn’t think SIBO is my main issue and that this may be a result of gluten intolerance or celiac. I don’t understand why the high fodmap fruit and veggies seem to be ok.

I am desperately trying to figure out if SIBO is the route of my problems and that’s caused my gluten issue and dairy and soya allergy or if I have celiac/gluten intolerance that has caused all this ?. 

As CRISPY CHIC mentioned, I may need to wait a year to get an endoscopy, so I guess I will have to wait till then to find out.

Thanks so much for all your lovely replies, you’re all so nice.

[Ennis-TX]

13 minutes ago, rowanie said:

Thank Ennis_TX. Before I went gluten free, my dietitian put me on the low fodmap fruit and veg diet, but I seem to be able to eat any of these without any problems and I didn’t feel any better on this diet. You can feed me onion all day long and I’m fine strangely. What then happened is that I accidentally managed to not eat any gluten. 4 days went by and I suddenly was feeling better. That’s what made me test out going gluten free. My dietitian said that she doesn’t think SIBO is my main issue and that this may be a result of gluten intolerance or celiac. I don’t understand why the high fodmap fruit and veggies seem to be ok.

I am desperately trying to figure out if SIBO is the route of my problems and that’s caused my gluten issue and dairy and soya allergy or if I have celiac/gluten intolerance that has caused all this ?. 

As CRISPY CHIC mentioned, I may need to wait a year to get an endoscopy, so I guess I will have to wait till then to find out.

Thanks so much for all your lovely replies, you’re all so nice.

From what I see often enough here, is damaged intestines from celiac lets SIBO sit in easy. And many times the pain and issues from the gluten cover up the pain/gas/bloat from the SIBO and it does not become apparent until one a GFD for awhile.