Food Intolerances, Ibs, Diet Changes

[stephsurf]

Hello all,

Just wondering if anybody can give me any advice regarding changing diets etc.

I have always had acid reflux but it has never interfered with my life. Ever since being diagnosed I just have horrible symptoms, mixed with IBS and at times I will eat something and it will make me physically vomit rather than just being nauseous making me think I am in some way allergic to a number of things. I have taken lansoprazole etc but this really only helps to a certain degree and doesn't help at all with the bloating, sickness and generally really unwell feeling I get after eating. Sometimes its only mild and other times it can be rather bad. I also feel like it may be contribute largely to why I am also sooo excessively exhausted.

I have come across 'Deliciously Ella's' blog, a young lady who else had POTS and appears to have gotten symptom free after 18 months via exercise and changing her to diet to become entirely vegan. She now no longer takes medication. I am at the point where I will literally try anything to feel even a little bit better and I really do think that my stomach etc has a lot to play in why I feel so hideous - my tachycardia isn't anywhere near as bad as it was before.

My question is what are your thoughts on diet changing, juicing for possibly related gastroparesis (just ordered a nutribullet to try this out) and cutting out gluten, sugar, carbs etc.

Would love to know all your thoughts and what you have done yourselves in an effort to change the way things are!

[Katybug]

I think dietary changes can be important for a lot of people but I don't think there is a blanket answer as to what changes will help you. For example, I went strictly gluten free for 4 months in hopes that this was my issue. I did not receive any benefits from this (although I didn't have any ill effects either.) To confirm it wasn't the answer for me, when I started eating gluten again, I didn't have a worsening of any symptoms. However I do have multiple food sensitivities such as bananas, grapes, avocado, cilantro/corriander, raw pineapple (can eat it if baked in baked goods), cucumber. I figured these out by keeping a food journal and keeping track of what I had eaten when I had certain symptoms flare up. I don't have what people imagine as "typical" food allergy symptoms but that's not surprising since I have MCAS. I have nausea, vomiting, severe abdominal cramping/pain, severe diarrhea, joint pain, migraine, sudden weakness and fatigue about 1/2 hour after eating these foods. It also will feel like my limbs get very heavy and my reflexes are delayed like the world is functioning a half a second faster than I am.

[little_blue_jay]

my tachycardia isn't anywhere near as bad as it was before.

Do you attribute that to the lansoprazole or to the diet changes you have made already?

[emartins]

As a newbie to this whole POTS thing, I cannot answer your question. I just wanted to warn that cutting entire food groups, such as carbs, can be damaging to your health. And with everything that's already going on, that's probably not something I would try. Juicing in particular can be tricky. You need to make sure you get enough protein, fat, and carbs for your body to function. I would suggest finding a registered dietician if you can. This way you can try out different things without harming yourself.

I've heard smaller meals throughout the day and good for dizziness and cardiac related symptoms, but I don't know about the gastro problems. I like Katybug's idea of keeping a journal to see what works and what doesn't. Hope you can find some answers soon and feel better!

[kayjay]

For me Gluten free has been the most helpful thing. Dr. Fealey at Mayo originally suggested it to me in 2009. Cutting back on gluten didn't help. 100% avoidance from lipgloss to soy sauce has really helped me heal. I'm on very few meds. A tiny bit of nadolol and a birth control pill for my endometriosis.

For me gluten free essentially resolved my IBS, migraines, vertigo, Reynaulds, fibromyalgia, and greatly improved my POTS symptoms.

I can't say enough about it. I regret not doing it sooner but I mentally had a hard time with it and result were not instant. I think I felt better after 6months but some of my healing really took a few years of gluten free.

I came back to add for anyone thinking of trying gluten free my suggestion would be to assume everything has gluten in it. I've been glutened by coleslaw and guacamole in restaurants. I assumed things to be gluten free that were not. Now that I have my children on gluten free diet I always ask or make certain it's "celiac safe". For example I used to eat dominos gluten free pizza and now I don't. I think my healing is directly related to being very strict about my diet. I recently reacted to eating French fries out of a shared fryer. even my dogs are o. gluten free food and I don't use any personal products that contain gluten.

I treat gluten as though it is poison. It might be overkill but as they say "the proof is in the pudding". I'm feeling better in my 40's than I did when I was in my 20's.

I really do think gluten free is worth a try for anyone with neurological problems or autoimmune issues. I just had to give it time and 100% effort to see results.

[badhbt]

I agree with KJay. I think going gluten free was the best thing I have done. I was able to get off of all the medications I was taking.

[stephsurf]

my tachycardia isn't anywhere near as bad as it was before.

Do you attribute that to the lansoprazole or to the diet changes you have made already?

Sorry for the late reply! I don't attribute to the tachycardia getting better to my lansoprazole no, but I do think just over time after my initial diagnosis that after 4-6 weeks my tachycardia slightly improved although I would put this down to building my exercise up on a daily basis.

[stephsurf]

For me Gluten free has been the most helpful thing. Dr. Fealey at Mayo originally suggested it to me in 2009. Cutting back on gluten didn't help. 100% avoidance from lipgloss to soy sauce has really helped me heal. I'm on very few meds. A tiny bit of nadolol and a birth control pill for my endometriosis.

For me gluten free essentially resolved my IBS, migraines, vertigo, Reynaulds, fibromyalgia, and greatly improved my POTS symptoms.

I can't say enough about it. I regret not doing it sooner but I mentally had a hard time with it and result were not instant. I think I felt better after 6months but some of my healing really took a few years of gluten free.

I came back to add for anyone thinking of trying gluten free my suggestion would be to assume everything has gluten in it. I've been glutened by coleslaw and guacamole in restaurants. I assumed things to be gluten free that were not. Now that I have my children on gluten free diet I always ask or make certain it's "celiac safe". For example I used to eat dominos gluten free pizza and now I don't. I think my healing is directly related to being very strict about my diet. I recently reacted to eating French fries out of a shared fryer. even my dogs are o. gluten free food and I don't use any personal products that contain gluten.

I treat gluten as though it is poison. It might be overkill but as they say "the proof is in the pudding". I'm feeling better in my 40's than I did when I was in my 20's.

I really do think gluten free is worth a try for anyone with neurological problems or autoimmune issues. I just had to give it time and 100% effort to see results.

I agree with KJay. I think going gluten free was the best thing I have done. I was able to get off of all the medications I was taking.

Thanks for both of your replies. I am going to attempt to start a vegetarian/vegan style diet with gluten-free mixed in too. I've heard a few people where this has not only helped but made them almost symptomless after a period of time. I'm not saying that will happen in everyone and it may have a lot of do with a number of thins and might take a little bit of time at it, but I may as well give it a go at this point.

When I initially got diagnosed I actually attempted to cut out a good amount of gluten, but I did slip up a lot of the time, probably eating things that contained gluten that I didn't know about and then eventually reverting back to my old ways. I did notice a slight difference at the time but then I don't know whether this was my symptoms getting better to a certain degree on their own. However, now that my stomach issues are almost as bad as my other POTsy issues I am getting a little fed up which is why I have decided to do this.

Can I ask you both if you were both tested for celiac prior to this dietary change? Mine came back negative, but I don't know whether this means we have some sort of gluten intolerance which wouldn't be surprising considering stomach issues are intertwined with POTS anyway.

[stephsurf]

I think dietary changes can be important for a lot of people but I don't think there is a blanket answer as to what changes will help you. For example, I went strictly gluten free for 4 months in hopes that this was my issue. I did not receive any benefits from this (although I didn't have any ill effects either.) To confirm it wasn't the answer for me, when I started eating gluten again, I didn't have a worsening of any symptoms. However I do have multiple food sensitivities such as bananas, grapes, avocado, cilantro/corriander, raw pineapple (can eat it if baked in baked goods), cucumber. I figured these out by keeping a food journal and keeping track of what I had eaten when I had certain symptoms flare up. I don't have what people imagine as "typical" food allergy symptoms but that's not surprising since I have MCAS. I have nausea, vomiting, severe abdominal cramping/pain, severe diarrhea, joint pain, migraine, sudden weakness and fatigue about 1/2 hour after eating these foods. It also will feel like my limbs get very heavy and my reflexes are delayed like the world is functioning a half a second faster than I am.

So funny you should say this regarding the raw pineapple. A few days ago I had canned raw pineapple out of a tin after my main meal which I have had before so know that wouldn't cause me any significant bother, but since I have been diagnosed I hadn't eaten any raw pineapple up until this point. Around 15-20 minutes afterwards I just felt a build up of really horrible nausea/lightheadedness that made me have to be sick and afterwards I had really bad stomach cramps. I've never experienced anything like it before, although I will say I feel really nauseous a lot of the time after just eating anything really, although less so with particular foods which I have yet to work out properly.

A few people have mentioned to me regarding MCAS just on various things I have posted and my symptoms pointing in that direction. When I feel particularly bad I do get facial flushing on my cheeks which to me is quite noticeable just because I never had this before. I have also noticed that since february time when symptoms got worse but we didn't know what it was that I almost developed hay fever over night with really bad pressure headaches, congestion and gritty/dry eyes. These symptoms got really bad throughout June, July and August and have cleared up a little now its late September. I also have a sore throat which I seem to always wake up with and is mildly waiting in the background at all times and I've also had quite a lot of bother with my ear of late too among other things. I also specifically made a post regarding panic attacks as I was randomly having them (or what I feel like are panic attacks but I just don't feel anxious at all before they happen) that always occur either after I have just eaten something or after physical exertion or when I'm really really tired; where I know I have pushed myself a little bit further than I should have done. I get tachycardia during these episodes and a blood pressure that rises quite high but also quite low intermittently as well and I get visual disturbance too. I also have joint pain across my back, arms and legs which seems to be constantly there no matter whether I have done exercise or not. I also am extremely fatigued all the time at the moment and have really bad circles (I know this can sometimes be a feature of underlying allergies - which makes me wonder because even though I've been prone to getting them all my life they are really bad a the moment to where I sometimes look in the mirror and think what is wrong with you! You've actually had a decent nights sleep haha. I know a lot of these things can be POTS related, such as the fatigue but sometimes I feel I question why I still feel so rotten even though I have a beta blocker controlling my heart rate a little more and I know my tachycardia is a lot better than it used to be.

Would be great to hear back from you if our symptoms sound similar regarding your MCAS diagnosis etc. just to see whether I should maybe pursue it further. I do remember in the hospital being asked if I had hayfever when the doctor thought I had POTS but he dismissed it almost straight away as I didn't have the classic red eyes and runny nose. I started taking the H1 and H2 blockers a while back but stopped after hayfever season was over - I didn't know whether they were making too much of a difference, but I do know there is an oral mast cell stabilizer (sodium cromoglycate) that people find useful, so your experiences on these (assuming you are also on them) would be of great value too.

Thanks in advance, would love to hear more from you!

[kayjay]

I was told I did not have celiac. I was never scoped. After Mayo clinic suggested gluten free I did testing through EnteroLab. They don't diagnose Celiac per se but Mayo clinic called me a "presumed" Celiac. I tell people I'm celiac. It's easier.

Celiac is really tricky to diagnose. I just went though the process with my son. Most Celiac people have certain genes, but some don't, most have certain blood work results but some don't, most have certain results after undergoing an endoscopy, some don't.

My point is that you can have negative testing for celiac and have celiac. I think currently the medical community suggests that over 90% of people with celiac are undiagnosed.

I had IBS symptoms so celiac wasn't an unusual guess. Keep in mind though it was a neurologist who diagnosed me- I was anemia and had low vitamin D. Apparently that is very common in celiac patients.

My son had no gastrointestinal symptoms. He had high blood pressure and growth issues. 6 months off of gluten and he is now perfectly healthy.

As for the vegan/vegetarian I eat meat, dairy, and eggs. I was really sensitive to dairy for a long time. Now that I'm gluten free I can eat dairy with no issues. It's very common for people with gluten issues to initially have dairy problems.

[stephsurf]

I was told I did not have celiac. I was never scoped. After Mayo clinic suggested gluten free I did testing through EnteroLab. They don't diagnose Celiac per se but Mayo clinic called me a "presumed" Celiac. I tell people I'm celiac. It's easier.

Celiac is really tricky to diagnose. I just went though the process with my son. Most Celiac people have certain genes, but some don't, most have certain blood work results but some don't, most have certain results after undergoing an endoscopy, some don't.

My point is that you can have negative testing for celiac and have celiac. I think currently the medical community suggests that over 90% of people with celiac are undiagnosed.

I had IBS symptoms so celiac wasn't an unusual guess. Keep in mind though it was a neurologist who diagnosed me- I was anemia and had low vitamin D. Apparently that is very common in celiac patients.

My son had no gastrointestinal symptoms. He had high blood pressure and growth issues. 6 months off of gluten and he is now perfectly healthy.

As for the vegan/vegetarian I eat meat, dairy, and eggs. I was really sensitive to dairy for a long time. Now that I'm gluten free I can eat dairy with no issues. It's very common for people with gluten issues to initially have dairy problems.

Hello,

I am assuming that I just had a regular celiac blood test - I am not sure what that is per say but it definitely wasn't a genetic tests, I believe it was looking for some specific type of autoimmune marker that may be raised in celiac's. I guess my symptoms have slowly being getting worse ever since I was about 14, and just last year I was diagnosed with largyngopharyngeal reflux, most likely GERD and also suspected IBS, but I haven't been given any formal diagnostic testing such as scoping etc. At the time my doctor told me I was too young to 'undergo such trauma' despite me being 21 years old. However lansoprazole and gaviscon have only done so much for me and having being on a treatment dose of lansoprazole now for over 40 months at 30mg, I was beginning to question whether that was actually now just causing low stomach acid which can have exactly the same symptoms it seems as having excessive amounts.

I think I'll definitely be giving the gluten-free a good go, because if it sorts all this out, I don't care how much I love bread I can't be living with this! It feels like its just getting worse and I don't know how much POTS itself has to do with that at this point!

Thanks again for your reply!

[Katybug]

Steph,

I will PM you late tonight or tomorrow. Currently I have a migraine that is making it hard to think.

Katie

[stephsurf]

Steph,

I will PM you late tonight or tomorrow. Currently I have a migraine that is making it hard to think.

Katie

No problem at all Katie, I really appreciate you taking the time to get back to me when you do.

I hope the migraines passes quickly - I understand fully how painful and debilitating those can be!

Sending positive vibes and look forward to hearing from you shortly x