It's Been 10 Years - Finally I Have A Diagnosis

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Oh I missed this thread but I am glad you are starting to get answers and the help that you need. I know it took me 12 years to finally get my endometriosis diagnosis and then it's just the battle to find what works for you.

Cooking from scratch is about the only way to avoid a lot of foods as I found when I tried gluten free (a lot of freefrom products tend to be packed with other nasties). I did however end up buying lots of takeaway style tubs and made extra each time I cooked so I had healthier "ready-meals" in the freezer for the times I didn't have time to cook from scratch (or more like when I couldn't be bothered).
 
Oh god Helen, I'm so sorry to read that you have been unwell for so long, and so happy at the same time that answers have ben found for your illness.
:) xx
 
Well that was short lived. I had 2 weeks almost symptom free once I started the probiotics and low fodmap diet but last week I started bloating again. I put it down to maybe mucking up my portion sizes or eating something I shouldn't but I have found that even if I stick to plan I bloat like crazy every time I eat. Looking like I will need to speak to the consultant after the probiotic course (early Feb) and maybe need another course of antibiotics then the probiotics etc again after. Apparently SIBO is notoriously difficult to get on top of and some people never do manage it. Was feeling really hopeful too :(
 
That's bad news Helen, it's the start of refining a process `i guess, it's hard to keep the faith but hold on. Really do hope you can start to fee better soon xx
 
Thank you, apparently there are a few other antibiotics that can be tried, though the best one is apparently really expensive and as I went through my work private healthcare I would have to pay for it, so I will opt for the cheaper ones first and see how I go. Will stick with the probiotics and low fodmap for now.
 
Am trying to have nothing too processed today whereas I usually have ready salted crisps in the morning. So far it is not as bad and have had a banana and 10 monkey nuts.
 
Well I looked 6 months pregnant by the time I got home. So frustrating :(
 
Goodness, I understand the frustration. A few years ago I was diagnosed with hashimoto's thyroiditis and the doctors made it seem like it wasn't a big deal and that medication would ease symptoms but it's not that simple. After talking to people who also have my illness, I've learned that hashimoto's can be just as debilitating and hard to treat as multiple sclerosis. :c Have you found a forum or a group of people with the same condition? Maybe they have some home remedies up their sleeve. And you mentioned vegan- with stomach issues, vegan diets are notoriously hard to do! A former girlfriend of mine had chrons and was vegetarian like me and we had to cook every veggie and most fruits so they'd be easier on the tummy.
 
Saw the consultant again today and I have another prescription, this time for Ciprofloxacin. He said he was not at all surprised I needed a second course as my breath test results were so high and that I may need a third of fourth course and to see how I am in June. We may need to repeat the breath test before a fourth one. I am back on low fodmap and probiotics after but he said not to be too strict with the low fodmap as it can actually make things worse and cause things to slow down too much.
 
Well today I spent the whole day in London being retested and then seeing the consultant this evening. Not only is the SIBO still there but my hydrogen readings were even higher than last time despite me sticking to the strict diet they recommended for the 24 hours before the test. Anyway, I have come away with a prescription for Rifaxamin which apparently is the best antibiotic for SIBO but only has about a 50% success rate so will see what happens. The doctor who did the test said my readings were the highest he had seen :(
 
Sorry to hear your treatment has not been successful I have been wondering how you were. Everything crossed for the Rifaxamin to work.
 
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