hello,
I am new to this site and am very happy to have joind. I am hoping to find some light at the end of this dark tunnel. I am 23 have celiac disease and have been on my gluten free diet for 1year and 3months. After I finally found out what was making me sick for years I was so hopeful and excited that I was going to be healthy again and have some energy! After a month or so on my gluten-free diet i got better for a month or 2 but then I started to get sick. first it was just once a week then it just got worse now after a year I feel like i'm 300 years old, I can hardly work, I'm newly married and I have hardly no intimate desire, and I'm so tired that I cant do the work around our house that I need to do. ahhhhhhhh I am so flustrated. Is this ever going to end! I go to an amazing gastro dr. and I also have a nutritonist. I am like the most anal celiac disease when it comes to my diet, I hardly eat out and my husband is on a totally gluten-free diet as well. I just feel like i'm the only one. I have been told that I am ultra ultra sensitive to gluten. I just cant see where I could be getting it from. I have been tested for so many things that have all come back negative, which is a good thing I know but I would just like to be normal again! Please is there anyone else out there like me?????

Maybe it is another food intolerance which is not uncommon. Not to say that is what it is, but once the gluten was gone from my diet, I was able to identify other foods that were also bothering me via an elimiation diet. My doc also suggested I keep a food diary for 4 full weeks and make room to note any unusual reactions I had which helped me find a couple more foods I have problems with.

I have other health issues that I give me problems from time to time still but at least I am pretty sure I have the food part figured out.

Some people take up to two years to heal but you should at least be feeling better. One common cause of this is bacterial overgrowth. Have you tried taking a probiotic?

richard

Hi Emily Ann,your experience has some similarities with my husband.

After diagnosis by biopsy-we too had high hopes for the gluten-free diet.My husband was in a very bad way and was almost bedridden he was so weak.
After weeks nothing seemed to be happening,and believe me we was strict!!
There was no way gluten was getting in his diet.

Anyway after 6 months gluten-free the doc did another biopsy,and found that although my hubbie had healed slightly,it was nowhere near as good as hoped.At this point the doc put him on steroids to help the healing process.Also helped him put some weight on.

He seemed to be getting better then went right down with symptoms back.
It turned out he had also developed a lactose intolerance(apparently common amongst coeliacs)
Since cutting out the milk,he's back on track and nearly off the steriods now.
He's now been gluten-free 1 yr and 1 month.

Have you been back to your gi doc.I think the only way to tell if you are healing is a biopsy.
Also,you may have developed other food intolerances.
Unfortunately some coeliacs do take longer to heal than others.For my husband, 2 yrs was mentioned by docs as recovery time.
Hope you feel better soon

I went through a similar situation. I was very sick when I first started the gluten-free diet and didn't start to notice improvements until about 5-6 months into the diet. Then, I started to slowly get worse again and that continued for about another 6 months. After about a year on the diet, I started to notice major improvements. Some things that helped me get better were re-analysing my diet. I also thought I was an anal celiac disease and I am also super sensitive to gluten. However, I learned from a product list (about 11 months into the diet) that I was eating gluten-free corn chips (humpty dumpty) that were cross contaminated. Also, I found that I reacted very badly to dairy products. So I eliminated everything with dairy in it (examples; dairy in cooking, chocolate, candies, ect.). Once these were eliminated I started to feel a lot better.

So my advice is to re-evaluate your diet even if you think it is perfect, because I thought my diet was perfect and it wasn't... call or e-mail companies if you have to. Also, you may want to try eliminating dairy products since many celiacs have issues with diary.

Me too - felt much better initially then a few months in felt like I was getting 'glutened' when I wasn't. Process of elimination proved the culprit was dairy (casein, not lactose). If you are getting gluten-esque symptoms such as fatigue, etc. I would suspect casein rather than lactose. Casein has the morphine effect like gluten, whereas lactose (from what I've read) is more of a GI problem. Casein is the milk protein, lactose is the milk sugar. Products that are lactose free are no good to people with casein intolerance, we need completely dairy free (and even check 'dairy-free' products for casein too - many 'dairy-free' cheeses rely on casein for their texture... I have not found one fake cheese that is both casein and gluten free).

Another idea is to check that your vitamin and mineral levels are in order. You might need to take some supplements, at least for a while, to build up your stores again.

I get glutening-like symptoms from dairy, too. I do tolerate goat's cheese though it seems, at least in the small amounts I eat it nowadays.

Pauliina

Thank you everyone for the advice! Its nice to know that i'm not the only one out there that is going through this