Diagnosis/treatment frustration

[BRAVESTAR79]

Just wanted to share my experience and solicit advice from anyone who has experienced the same frustrations, as I am sure many of you have. I am pretty sure I have Celiacs as I have endured 5 months of horrendous symptoms and have lost 4 stone in a very short space of time. I have been seeing my GP since last August about stomach problems amongst a host of other symptoms, which I now believe are/were all food-related.  The doctor has treated me for anxiety and depression and prescribed anti-depressants for my symptoms and even sent me to an anxiety specialist because I had constant nausea, diarrhea, vomiting, fatigue, insomnia, migraine, indigestion, acid reflux, uncontrollable crying, stomach pain and other lesser symptoms. I have also been given PPIs, Ranitidine, anti-emetics, diazapam, and sleeping pills. I have been saying for months that I don't think my symptoms were all anxiety driven but to no avail until I pointed out to the doctor that I had lost 4 stone in 4 months (without trying, obviously). I was finally given blood tests a few weeks ago and Helicobacter was picked up and I was treated for this too -- the eradication therapy made me feel awful and I saw no improvements after. I learnt about the FODMAP diet from a colleague and started it just over 3 weeks ago. Two days in my vomiting, diarrhea and sickness went; 3 weeks in and most of my symptoms except the migraines and insomnia (and tingling hands) have almost completely dissipated. But,,,,I am still left without a diagnosis and with a lot of sceptical opinions of my improved condition: apparently this is all psychosomatic, as were the origins of the symptoms in the first place!! I don't have a 'diagnosis' so I can't prove to anyone that all my problems are food related and I am still being treated as somebody with mental health issues rather than gastric problems. I am very frustrated and feel undermined. The waiting list for a GI consultant is at least 4 months and I refuse to keep eating gluten until I see a specialist as is recommended. There seems to be very limited understanding of gastro problems and using diet to control them. I feel that nobody took me seriously when I was very ill and nobody is taking me seriously now that I have made myself better. Anybody else experienced similar? :-(

[deb-rn]

I don't have a definitive diagnosis as my initial blood test was negative... but after doing elimination over 2 yrs ago, I'm not going to purposely poison myself to prove anything to anybody!  I couldn't force myself to eat enough gluten for long enough to prove the point!  Your body told you how to start... so keep up with it.  You may find more sensitivities as well.  Sometimes your damaged gut reacts to things that will be safe for you later on after you heal.  Healing can take many months, so don't give up!  Gluten is not a food group that has something you will be missing if you avoid it!  Everyone would be better off without it.  Some of us are just more sensitive than others!  Take heart and get your support from these wonderful people!

Debbie

[BRAVESTAR79]

1 hour ago, deb_rn said:

Thanks, that is good to know. My only motivation to get a diagnosis other than the prescription foods is to defend myself from people's annoying comments and responses. However, like you said it is not about proving anything to anyone. If I am asked to go back on gluten for a diagnosis I really don't think I would be able to. Not after having felt like a new human being for the past 3 weeks. I hope one day I can eat hummus again! :-)

 

[SLLRunner]

Unfortunately, there are people who don't take other people's heath problems very seriously, even when people are diagnosed with celiac.  That said, there is nothing you need to prove to anybody.  

See this about hummus: https://www.celiac.com/articles/22230/1/Traditional-Hummus-Gluten-Free/Page1.html