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elless

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elless Rookie

Hi everyone.  This is my first time posting although I've been reading some of your posts for a week or so now.  I have a few questions that I hope you can all help me with. 

 

A little catch up on where I've been and where I am currently.  I was diagnosed with hypo thyroid 10 years ago and have been on Synthroid since then. At that point I was getting horrible back pain, tired all the time, and just plain didn't feel well.  Since then some symptoms have stabilized and some have just gotten worse.  For the last 10 years and probably well before then, new issues just keep popping up.  Just a list of symptoms I have had on going and unexplained are chronic diarrhea, stomach pain, constipation, bloating, gas that just seems to not go away, pain in my lower back, random hot flashes, anxiety, dizziness, fatigue, crying for no reason, and other minor symptoms.  I have had days where I would have to run to the bathroom 5 or 6 times a day.  After I would feel so exhausted and hungry to the point that I just can't seem to get full.  This would be followed by about a week of constipation, bloating, gas etc.  I have had stomach, liver and gallbladder ultra sounds come back normal. I have taken multiple thyroid tests that came back normal.  About 2 years ago I started having short periods that would last about 2 days and then I would get multiple in a month.  Usually about every 2 weeks.  I've had ultrasounds for that come back normal.  I've been told its hormones, depression, all in my head.  At one point I was in my Drs office in tears because nothing was making sense.  I've also been diagnosed with high levels of fatty enzymes in my liver.  I am only 30 years old, I exercise, eat very healthy.  I rarely have sugars and eat mostly whole foods.  So you can see where all my frustration is.  Recently my sister suggested something called the FODS food list for IBS, I did that for about a week and noticed that my symptoms flared up when I ate bread.  So I cut it out for about a week and I started feeling better. 

 

Anyway, I had my blood tests for celiac this morning and have an appointment with the GI next week.  I know I am supposed to continue eating gluten until testing is completed.  I was only off for about 5 days and since then have been eating it just not every day.  I noticed when I do eat it I have horrible stomach pains, I bloat up with in 30 minutes, I get really tired and heavy and this lasts about 3 or 4 days.  My question is do you think being off of the gluten off and on a couple days here and there would make much of a difference?  And is it normal to get such a horrible reaction to it only a few days being off?  My doctor had said I didn't have to be on it for the blood tests but everything I read says the exact opposite. 

 

I'm really hoping that this could be the answer. I'm at my wits end and at this point just don't want to eat for the fear of getting sick.  Have any of you had similar experiences or have any advise on how to get through all this?  Thanks all!

 


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cyclinglady Grand Master

I am sorry that you are feeling unwell!

Here is a link to the University of Chicago's celiac website. Share the test requirements with your doctor:

Open Original Shared Link

Keep eating gluten until all testing is complete! It is hard, but it can be done! You can do it! just take one day at a time.

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    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
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