I was diagnosed in 2012 and have had an array of symptoms since, any question I put to my neuro is always answered with 'We don't know enough about it', which may be true but doesn't really help-he doesn't seem to now much.
One of the problems I seem to have is random pains (not constipation) and most annoying is a lot of bloating. I have had a pelvic scan (my mum had ovarian cysts) but the result was normal. However, I contacted a group in the UK who said they had heard of a link between CIDP and Coeliac. Has anyone heard of this or experienced anything like it?
Sorry I have no answers for you, but I do have a lot of bloating and intestinal problems as well. I’ve had all of pelvic pains and all of my reproductive organs checked thoroughly also. I don’t have a period though. And no one can tell why.
That's really strange, I've stopped having periods too!
They've tested my hormones etc. all normal, can't explain it!
I've had experience of stomach problems, pain and bloating as well as a feeling that my intestines are trembling at times which feels very uncomfortable I have experienced this almost constantly since my diagnosis and seems to ease somewhat after my regular Ivig treatments. I don't have periods either but I'm guessing that's because I'm a man so no help for you there :-)
I have done a lot of digging into the cause of the bloating and random pains including pelvis, and have found some answers. There may be a predisposition to what is called Leaky Gut which has to do with small intestines blocking absorption for many different reasons. It doesn't have to be just one.
One example is if many antibiotics were taken in the past it could strip away good bacteria as well as the bad. Long term or high dose prednisone is a problem too. Another cause may possibly be from vagus involvement if you notice that you digestion is slower since the onset of cidp. The cause can be malabsorption issues from long term acid blockers. 1/3 of us may carry the MTHFR gene which means our body cannot absorb nutrients from regular vitamins and foods.
All of these can bring on a sensitivity not only to gluten but other foods as well. You can research Elimination Diets to find out more.
It is very important to fix this so your body can get the nutrients it needs to heal myelin and axonal damage. I went to a new doctor to address this just this week.
This is my plan:
No dairy, no gluten, no peanuts, no refined sugar and no caffeine to avoid known common sensitivities to the small intestine. I am guessing that's to start.
Take Krill 3X daily, (Krill-plex by Pure Encapsulations) to reduce inflammation. It is the best form of Omega 3.
Probiotic, 2X daily, (Ortho Biotic Powder) to put the good bacteria back into my gut.
Methyl vitamins to help with the possible MTHFR genetic problem. (Thorne Methyl-guard plus, contains 6 essentials in one capsule) It converts basic vitamins like B12 into the methyl form which is easily absorbed. Methyl or active vitamins are fine for those without the MTHFR gene.
Drink lots of green tea.
I hope this helps. People have been asking me for 5 years when my baby is due. I will only miss looking pregnant when it comes to people opening doors and helping me with my luggage. I can't get my old tummy back soon enough.
Wow! I'm sorry to hear you have such problems, I don't seem to have any digestion problems, just can't explain the random pains and bloating.
I did however speak to a lady recently who is a confirmed Coeliac, and she has suggested getting tested, I'm doing this next week. So I suppose that would involve me cutting things out as you have suggested.
I think it will be another trial and error situation, finding out by elimination etc. So much of this to me is educated guessing as I don't know anyone else who has CIDP. It's so unbelievably helpful to have all your comments, it helps knowing I'm not alone in my little bubble scared and not knowing exactly what I should be doing!
Thank you xxx
spent last night in A&E (ER to my American friends) with the most incredible abdominal pain, Ive never experienced pain like it came back as being undetermined cause and disappeared almost as quickly as it came on.
Blood results, xray came back normal even had a surgical consult and they were baffled I finished a course of Ivig last week and although they wouldn't say out right I got the impression that they might have thought that it was somehow Ivig or CIDP linked
The plot thickens... I hope you're okay now? I'm being tested for Coeliac tomorrow, but I've heard from a few people who have stomach probs with CIDP, I wonder what on earth it could be?
I am also having the symptoms you are describing. I have CIDP and have been getting IVIG for 3 years now. In the past 4 months, I have had 3 different blackout episodes where my blood pressure bottoms out, rapid heartbeat, shortness of breath, drenched from perspiring, followed by major diarhea. The last blackout was the worse so I was taken to the ER. This time I started passing blood which lasted for about 36 hrs. including fever. A CT scan was done and I was told I have colitis. I have an appointment with a gastroenterologist in 2 weeks as he is waiting for my colon to heal some before testing. I am curious if this is somehow tied to the CIDP as both are caused by autoimmune.
I want to keep up with you and what you find out as it sounds like we have something similar going on. I will post when I know something more definitive about my own testing.
Yes, it would be great if we could get enough info-maybe we could get published! LOL
Sorry, trying to keep upbeat, I'm fed up of waking up and not knowing if today is going to be a (relatively) good or bad day. My bloating has persisted, it's interesting you mentioned about perspiring-I've noticed I get bad hot flashes and seem to sweat a lot more than anyone else even though the weather may be cool. I've also had an ECG as I get fluttering of my heart every day, sometimes so much so it's rather worrying, the scan was normal, but of course I didn't have palpitations when the equipment was connected!
I will be getting the coeliac test results next week, so Ill let you know. I've been referred to a gynaecologist but maybe it should be a gastro as well! I'm not going to give up until I have an answer!!
Hope everyone is having a 'good' day.... :)