5 Plus Weeks On The Gluten Free Diet But No Improvement

[Coolclimates]

On May 4, I was diagnosed with Celiac Disease (based on my symptoms, blood test results and stomach biopsy). Since then, I've been on a strict gluten free diet (although I'm sure I've made some mistakes...but I don't get "sick" like others say when they eat something bad. However, my symptoms haven't improved and I just wonder how long it will take until I start feeling better. I've had many of these problems for 10 or more years, so I assume I've had celiac disease for a long time before I was diagnosed. I'm now worrying that I'm allergic to casein or dairy products.

These are the main symptoms that I've been having:

sleep problems, insomnia, frequent waking, excessive night sweats

restless legs, leg cramps

acne

allergies (facial congestion, headaches)

fatigue, tired all the time

depressed, anxiety

back problems

easy bruising

frequent nosebleeds

frequent yeast infections

acid reflux

weight loss

Fortunately, I don't suffer from major stomach pains or digestion problems (other than acid reflux).

Has it taken months for some of you to feel better? I keep hearing about all these people who feel better in just days. I wish that was me, so I'm feeling frustrated.

[kareng]

I just seem to be talking your ear off today. Have you been blood tested for various vitamin type deficiencies? Iron, B12, D, and also, thyroid. I found that when I had gotten my iron, etc back up close to normal, I felt much better. More energy, less aches and pains, nails growing thicker, skin less dry and itchy, etc. You and I may have other intolerances to work on but, start with a few basics to feel better.

[lucia]

It seems to me. from reading people's posts here and from reading the literature especially Dr. Peter Green's book, that people's GI symptoms tend to clear up first. The immediate reactions that people describe to the gluten-free diet are usually around their GI symptoms. The other stuff - especially the neurological stuff - takes longer to heal.

Now that you're firmly established on the gluten-free diet (an achievement in itself!), I second kareng's suggestion to get your vitamin levels checked. It's also a good time to start tracking your diet against your symptoms, since, as you said, you could have secondary intolerances/allergies. You're, like, in phase two now of gluten recovery.

In my own case, my GI symptoms seemed to go away entirely after just 5 days on the gluten-free diet. I ended up having secondary reactions though to soy and lactose after I stopped eating gluten. Oddly, as soon as I started the gluten-free diet, I came down with terrible insomnia that has yet to go away entirely. I'm also struggling with neuropathic pain in my feet, legs, and hands, and "brain fog". All of my symptoms are getting better slowly, but it's been slow. I've been gluten-free now for 10 weeks.

[mushroom]

Quitting gluten is not like turning off a light switch. It is like turning off the lamp, but the lamp is still plugged into the wall and electricity is still flowing to the lamp. You are the lamp. The light is turned off but it will take a while for the current to abate through the rest of the lamp. A lot of the symptoms you describe persisted with me for months/a year or two.

The easy bruising I controlled with grapeseed extract and vitamins A and C. I took B12 injections, 50,000 units Vit.D weekly, now monthly, folic acid, a B vitamin complex, a multimineral. I took digestive enzymes and probiotics, with yogurt every morning with flax seed oil. And I eliminated a lot of other foods that I found were bothering me. I am 2-1/2 years down the road now and finally getting a handle on what my dietary problems are.

So this is just to say, be patient, listen to what your body is telling you, take note of what you are eating and how it makes you feel, and have hope that soon you will be back at peak health

P.S. My insomnia (that wired feeling) has gone away, I still have some nasal congestion, my fatigue and depression went away with my nutrient deficiencies, my back problems will never go away, my nosebleeds and mouth sores went away....

[redsidekick]

It took me months to finally feel normal again (but I had major GI issues). This place was a source of comfort reading other people's stories and knowing they went through the same things I was going through. Hang in there, it does improve.

[Coolclimates]

I'm planning on getting my blood checked for dairy, soy and egg allergies next. That is interesting to know that the stomach/ gi problems are the first to improve. Since I've never had many stomach problems (other than acid reflux, which I believe will not go away with the gluten-free diet), maybe that is why I'm not noticing an improvement yet. For those of you who had (or have) symptoms like me (not stomach problems), how long did it take for you to feel better?

[sb2178]

Fatigue is mostly cleared, and I'm on week five now. Mg probably made a difference with that, as did vit D. I've only really started to feel back with it (mood and energy) in the last week, but had been steadily improving. Mood was definitely worse for the first couple of weeks. Weight stabilized in the first three weeks and I could still stand to gain a couple pounds, but nothing of concern.

Lactose is also fine again, although it was iffy for the first couple of weeks.

I'm also mid-twenties and had a relatively quick diagnosis and normal biopsy, so my issues were caught early and may be intolerant rather than full blown celiac (diagnosis: you have a problem. avoid gluten. we don't know about oats. your call.) If it had taken longer for a dx, I'm sure recovery would take longer as would recovery with impaired intestines!

[Coolclimates]

The first few weeks were the hardest for me, too. I had all kinds of mood swings, crying spells, etc. I also had headaches. I assume that they are all withdrawl symptoms. I'm still having some trouble with my moods, but much less than I used to. However, I still feel fatigued as well as most of the other symptoms. My weight has remained the same. I'm on the thin side, but certainly not alarmingly thin. I actually like the weight that I am and hope I don't gain too much weight!

I'm now beginning to wonder if there is gluten in my lipstick, which I wear daily. It's Revlon brand and I've heard that they are vague about gluten issues when they're asked.

Does anyone know of any gluten free lipstick that is safe?

[ciavyn]

My issues besides GI have just recently started to clear up. Constantly tired, arthritic pain, hip pain, allergies, etc. Within the last month or so they've gone away. I've been gluten-free for 8 months.

[Coolclimates]

So it sounds like not everyone just feels loads better in a matter of days or weeks. That is reassuring, but unfortunate. The other day I saw a dietician and explained the issue. She told me that she didn't understand why I wasn't feeling better after being on the gluten-free diet for 5 plus weeks. She said most Celiacs notice almost immediate improvement. All I can hope is that she is rather ignorant or misinformed about this condition. Thoughts?

[sb2178]

Well, I'd say that there is the whole bell curve thing, and you're probably just on the slower end. I mean, there is the sense of "Oh I feel better" but I'm discovering that I'm still not quite up to par when I push it a little even though I am *much* better. Unemployment is good for being able to take unplanned naps ;-).

Say, for example (no real basis for these numbers), maybe noticeable improvement is present in 40% after 2 weeks; 50% after 3 weeks, 60% after 4 weeks, 75% after two months, 90% after three months, 95% after six months... etc. I would imagine that anyone who had a longer diagnosis time would take longer to heal too.

And you've probably read all the lists, but:

- replaced all questionable cookware and scrubbed everything else well

- all cosmetics, soaps, shampoos, dish soap etc (laundry detergent?)

- cleaned all surfaces including shelves/interiors

- tried a total gluten-free kitchen

- spouse/kids/housemates (if relevant) bourn contamination

- pet food/litters (wheat-based litters... ack!)

- cleaned laptops, phones, etc

- eliminated shared lines/ shared facilities

- avoid eating out ??

- other food intolerances

I'm definitely having issues after eating at other people's houses. And I tried Annie's gluten-free mac & cheese last week and was sick as a dog the next day.

Maybe talk to your dr. and see if you can have some blood tests done early (2 month, 3 month?) to see if your levels are dropping or if you are still having significant exposures? I don't know how soon they would show a drop, although 6 month tests seem pretty common. If your bloodwork has improved a lot, then maybe explore other issues; try an elimination diet.

Anyway, my list of ideas. Other folks probably have more to add.