Should I Eat Wheat Until the Gastro Appt?

[Irie]

I am a 42-year-old woman. For the last fifteen years I have had near constant 4+ pitting edema in both of my ankles which tapers off when it gets to my knees.  I have also had thinning hair (not like alopecia areata - just thinning all over); very thin brittle, flat fingernails; constant gas and diarrhea; and depression/anxiety mixed; general malaise; and constant fatigue.  I have also been obese with a bmi that has ranged from 35 to 43.  Five years ago when I went to a nutritionist, a vitamin D level was drawn and found to be at 8.  I was given high level supplements and then told to take a vitamin d supplement daily. Two years ago, a mental health counselor requested that my primary care doctor draw a B vitamin panel and my B12 value was found to be low (I don't remember the actual value) and I was prescribed vitamin B12 shots which I received for about a year and now I take a sub-lingual supplement.  

I have been to many different specialists regarding the swollen ankles - I have had to echocardiograms and an ultrasound of my legs.  Nothing out of the ordinary was found.  At one point, about ten years ago, I went to dermatologist about my thinning hair.  He had a blood test for Lupus drawn.  The first test came back with something that had him send me for a second test.  The second test confirmed that I did not have Lupus and it was just determined to be some idiopathic hair thinning and to use rogaine for women.  (I didn't like it and stopped.)

None of the many internal medicine doctors or specialists ever suggested I see a gastroenterologist.  They all told me I need to lose weight.  I tried unsuccessfully many times.

In June of this year, I started seeing a doctor for help with weight loss.  I was put on a protein sparing modified fast.  This diet drastically cuts carbohydrate consumption.  I ended up not staying on that diet but I did go with a ketogenic diet and cut carbohydrates way back to under 50 grams per day which totally eliminated anything with gluten in it.  I have lost close to fifty pounds and have the energy to exercise and feel so much better.

The reason I started considering that I may have a gluten sensitivity is that since I have been on this diet my ankle swelling is GONE completely, my hair has not stopped falling out and I have so much energy.  One day, I worked out a lot in the morning and was so busy I didn't have a chance to  eat.  I was really hungry.  I stopped doing the ketosis part of the diet but I hadn't eaten any added sugar or bread or rice.  This particular day, I went to KFC.  There is a meal at KFC that fits into a ketogenic plan which is grilled chicken and green beans.  I always ask for no biscuit but the server put the biscuit in my bag anyway. I added the calories into my fitness pal and figured, what the heck I have more than enough calories to account for it so I ate the whole biscuit.  When I got home from work I had terrible diarrhea and by the time I went to bed that night, my ankles were swollen. 

I started googleing all of my symptoms and celiac kept popping up.  Now I am wondering why no doctor has ever sent me to a gastroenterologist. I don't drink alcohol very often and I eat meat so it makes no sense for me to have a vitamin B12 deficiency.  One of my maternal aunts has celiac sprue.  She was wasting away and looked very malnourished and couldn't leave the house due to diarrhea when she was diagnosed which is one of the reasons I never thought of it for myself because I have always been overweight. 

Part of me is very excited that I may have found an answer to all of my myriad of ailments over the years.  The other part of me is nervous because I have always felt that doctors treated me like I was just a big fat hypochondriac even though they could see the swollen ankles - which they always blamed on me being obese but I know plenty of obese people who don't have swollen ankles. 

My appointment is not until mid-February (there was a doctor with an earlier appointment but I looked at his press ganey scored and feedback and they were horrible so I rescheduled with a doctor who had better feedback.  

Should I eat wheat until the appointment so I am ready for tests?  I didn't stop eating wheat to be gluten free but because of the weight loss diet.

Thanks for your help. 

[tooth-whisperer]

I'm in the same boat as you, very new to this and not an expert, but from what I've heard it's usually recommended to keep eating wheat products so that your body is actively reacting when the tests are done.  However, your physician and/or the specialist should be consulted for any decisions, as always.   You should definitely call and check with the specialists office, ask to talk to the doc's nurse or the doc him/herself, and see what they recommend.

 

[cyclinglady]

In order to get a diagnosis, you must be consuming gluten daily.  Here is a link to the University of Chicago's celiac website:

Open Original Shared Link

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

I am am sorry that you are struggling.  It is so common!  

 

Welcome to the forum and let us know how it goes!