Ups And Downs

[harley]

Hi, I have a few questions that I would like to hear some feedback on. I was diagnosed by a positive biopsy 2 months ago. The biopsy report indicted that my villi were basically completely gone. I have been gluten free since the diagnosis and checked all personal care products. I am trying to stay away from dairy as I think that may be a problem too.

1. I still have not seen much improvement. I would say that I have only seen about a 10% improvement-and only on some days. In fact, the past 2 days have terrible (my symptoms are mostly digestive issues). I had a product with milk in it a few days ago and my reaction seems to be worse than a reaction when I consume gluten????? How long does a reaction usually last?

2. Just saw my Dr. yesterday and she wants to do an abdominal Cat Scan. Has anyone else had this. I am concerned that the Dr. thinks there is something wrong beyond Celiac.

3. Is it normals to "good days" and "bad days" even when you are following the diet vigilently. I feel like some days are better than others with the cramping and bathroom issues. There is no consistency. Anyone having similar experiences?

Thanks in advance for your thoughts.

[CarlaB]

It's normal to have good days and bad days. My reaction to the casein in milk is every bit as strong as my reaction to gluten. My reactions are 8 days.

Unfortunately, as long as the past two months have seemed to you, it takes on average 2 years to heal. Keep it up, and keep looking for the hidden gluten!!!

[Nooner]

harley,

I am also new to this, just went gluten free on August 4, 2006. From what I've read on the board and my own experience, it's completely normal to have good days and bad days. Cross contamination has been the big issue for me. When I get glutened, I can usually trace it back to the peanut butter jar or the sugar bowl or baking soda that was used "pre-gluten-free" and probably contaminated. I've thrown out most of the "pre" food and labeled the "post" food so I know it's safe. My husband also went gluten-free, at least at home.

Do you have any food issues besides gluten and dairy? For me, poultry and broccoli cause a reaction as severe as being glutened. Go figure.

Hang in there. This message board has been very helpful to me, and I hope it is to you, too!

~Li

[aikiducky]

Yes, as the others said, it's completely normal to have good days and bad days, even when you don't make any diet mistakes.

Add to that that a reaction will go on much longer than you'd think (mine can take a couple weeks) and you might sometimes be sick from a case of cross contamination you already forgot about!

Leave dairy out completely for a while and see how you feel. If you have it "occasionally" you'll never know for sure whether or not your having a reaction or not.

If it all gets too frustrating, we're all here to vent to!

Pauliina

[sillyyak]

Yes it is completely normal to have good days and bad days. It took me about 6 months after going gluten free cold turkey to feel even remotely better. Mosty I have had stomach pains on occasion and the D that sometimes pops its ugly head up.

I also have had CT scans my md's have ordered to see if there is nothing else. Not uncommon, I think.

[dionnek]

I've got the same problems. I've been gluten-free for almost 4 months now and do not feel any better. the only difference is I've gone from being hypothyroid to hyperthyroid, so that tells me that I must be healing and absorbing the hypo meds now, even though I don't notice any difference. I think it's good to have a ct and nothing to worry about - I've had 3 and an MRI of my brain (not to mention various other tests!)

[heathen]

Hi, I have a few questions that I would like to hear some feedback on. I was diagnosed by a positive biopsy 2 months ago. The biopsy report indicted that my villi were basically completely gone. I have been gluten free since the diagnosis and checked all personal care products. I am trying to stay away from dairy as I think that may be a problem too.

1. I still have not seen much improvement. I would say that I have only seen about a 10% improvement-and only on some days. In fact, the past 2 days have terrible (my symptoms are mostly digestive issues). I had a product with milk in it a few days ago and my reaction seems to be worse than a reaction when I consume gluten????? How long does a reaction usually last?

2. Just saw my Dr. yesterday and she wants to do an abdominal Cat Scan. Has anyone else had this. I am concerned that the Dr. thinks there is something wrong beyond Celiac.

3. Is it normals to "good days" and "bad days" even when you are following the diet vigilently. I feel like some days are better than others with the cramping and bathroom issues. There is no consistency. Anyone having similar experiences?

Thanks in advance for your thoughts.

i felt like i slept for 3 months after i was diagnosed. seriously, every time my butt hit the couch, i fell asleep. even at other people's houses, and sometimes on the commute to school. if you think about it, it makes sense. your body is finally able to repair itself after years of damage--it's not going to happen over night. i was diagnosed in february of this year, and i'm just now feeling healthy. and there is no GI consistency. some days are just...poopy, for lack of a better term. and thank God it's just a catscan and not barium. ick. my doc put me through a slough of tests that all came back normal... but it's better than a doc who doesn't take you or your condition seriously.