How Long 'til I Feel Better?

[teamworkjr]

Hi, all. Hoping you can offer some insight since I'm getting very little from my MD. Dx with celiac about 3 weeks ago and have been gluten-free now for 3+ weeks. Everything glutenous is out - food and personal care products. I felt great and had normal poops (sorry to be so graphic) for 3 days. However, for the past 2 weeks it's been a downward spiral. Stomach pains and diarrhea are back to the norm. Is this at all normal? Everything I've read makes it seem like you go gluten free and you're better within days and that's the end of it. I'm so tired of worrying about all this. Could someone PLEASE offer me some words of advice or insight into why I'm STILL SICK???? Thanks!

Jennifer

[Sophiekins]

My suggestion would be to start a food diary - on one side of the page, list the foods you eat, on the other side of the page, write about how you feel that day (bowel movements, stomach sensations, headaches, bloating, difficulty sleeping, balance issues, anything you're experiencing. . .even depression or other emotions). After about a week, you should be able to go back through your diary and pick out the things that are making stuff worse. You may find that you need to eliminate dairy for a couple of months (common among celiacs. . .usually you can reintroduce it once your intestines have healed), or you may need to eliminate corn or soy.

There may also be a few sources of CC that you've missed - are all of your pills and vitamins gluten-free? What about your toothpaste? (Some toothpastes have gluten, some don't, but they aren't always marked because they're not a food. . .Colgate Cavity Protection is okay, I'm not sure about others. . .) Lipstick or lipgloss? Your cutlery drawer? Nonstick pots and pans? Wooden or plastic spoons? Your tupperware? Your partner/kids? Your job?

While some people feel better almost immediately and never suffer again, some of us have retrograde celiac disease which means that the damage to our bodies is more or less permanent and we'll have bad days and good days for the rest of our lives. Personally, I know that after exposure to gluten, I will have about ten days of minor misery (is that an oxymoron?). . .stomach pains, diarrhea, bloating, etc. . .with no visible cause. It will then clear up and I'll feel fine. This could be all it is, since you're only three weeks gluten-free, but two whole weeks of bad days, however, is worth looking into.

[blueeyedmanda]

I second the food diary notion, it really helped me before I was diagnosed and it continued to help while I got back on my feet and learned the in's and out's of the new diet. It is so much easier when you have something on paper too.

CC is a big thing, not to scare you but you would be surprised on things you would never think of as being sources of glutenings. So check the pills and shampoos and soaps. In time it will be easier.

Good Luck, and when you will feel better does vary in everyone, don't get discouraged.

[teamworkjr]

Thanks for your advice. I suspect a food diary is the way to go. This is all just so unreal to me that after almost 40 years I can be this affected by foods I've eaten my whole life. I spent the bulk of the week looking into personal care products. I ditched my shampoo, toothpaste, shaving cream, body lotion, face lotion, styling mousse, and hairspray. What a journey! I'm hoping it's just that my intestines are so messed up right now that anything touching them hurts. I started taking Probiotics yesterday, so hopefully that will expedite the healing process. I'll try taking out dairy and see if that helps. Thanks for the advice. Please keep the encouragement coming as my positive outlook seems to ebb and flow by the hour! Thanks again!

Jennifer

[henrietta]

[i agree it takes time for your gut to settle down, I am now several months on from eliminating gluten and it has obviously healed a little, because now I can "test" foods to see if I can tolerate them, and some I can, some I definitely can't. Any form of bread is a total no no apart from gluten free, it provokes an instant (30 min) reaction of strong stomach cramps followed by numerous swift visits to the bathroom.. Yet I can eat a piece of victoria sponge and only ge mild cramps the following day!

Three weeks isn't long enough for everything to get out of your system and if you are new to eating this way, you may still be making mistakes as I did. The most innocuous foods have gluten or the proteins of oats etc in them, and so scrutinise your diet very carefully.

I would say at least two months before you suddenly think, "Gosh, I feel better today!" so hang in there..

(oh and I am 57 and have eaten wheat all my life until last year, I reckon our bodies get to a point where they just can't cope with what to them is poison and let us know no matter how old we are!)

[Budew]

Henrietta-

You are right, it takes time to heal. It depends a lot on how much damage gluten has done to your intenstines and if any related conditions have manifested. I am 7 years into healing and just beginning to show signs of healing. It turned out the damage was extensive and as a result I am sensitive to many things. All grains and legumes to name a couple.

What concerned me was testing foods with gluten. If you are diagnosed celiac the damage gluten does to your system occurs even if you don't notice a reaction.

Probiotics are a good idea. I use l-glutamine as well. It promotes healing, and has helped me.

I hope you find this forum as helpful as I have!

Budew

[GlutenWrangler]

Many sources of information about celiac disease will say that symptoms will usually cease after about 2 weeks on the diet. For the vast majority of us, this couldn't be farther from the truth. I'm sure there are some people who fit into this category, but generally healing is a slow, arduous process. Younger people usually heal much faster than their older counterparts. I'm 22 years old, 7 months into healing, and probably only about 20% better. But we are all different, and we all have different degrees of damage. Hopefully you see a rapid recovery. Your worsening symptoms don't correspond with the cessation of your symptoms in the beginning. It suggests that you have been consuming a hidden source of gluten, and in that case, a food diary is a great idea. On the other hand, when I started taking probiotics, I had symptoms similar to when I accidently ate gluten. The initial phase of probiotic supplementation can include something called "excessive drainage syndrome". This is the process by which your body releases large quantities of toxins from your intestine. It can cause bloating, headaches, gas, and diarrhea. The symptoms usually abate in 2-10 days. Although it is more likely you have been consuming hidden gluten, it may be something to think about. Good luck.

-Brian

[PetitHaricotVert]

Hi Jennifer,

I'm relatively new to this as well and I can honestly say that you are not alone! I was dx last September, was good for about a few weeks after being gluten-free, then had a horrible downward spiral for three months - chronic D, nausea, horrible urges, anxiety, etc. I suspect I've had celiac for about 11 years so I know it'll take a while to heal. Everybody is different in the healing process but I can share what has helped me. I've been keeping a food journal and try to avoid things that would typically upset my stomach - like caffeine, alcohol, excessive sugar, dairy, etc. I also saw an allergist and learned I was allergic to peanuts and almonds - which were a major staple in my diet! Then after seeing a nutritionist, I started taking probiotics and enzymes - another major help for me. This is my fifth month of being gluten-free and I still have good days and bad days. Fortunately the chronic D has subsided - yippee! From everything I've read, it seems it is typical to have these symptoms after being gluten-free since the symptoms of celiac will often mask other problems. Keep posting here! This is a great to learn (and vent!). Good luck!

[naturalmomma]

Im new to this too and I have experienced the same thing. I felt really good for a couple of weeks and my thyroid meds were working better, then poof! I was experiencing sezure like symptoms cause of vitamin deficiency. they have gotten better but I am experiencing brain fog. It feels like I am partially brain dead? Does this go away? Ive been dealing with this for a while but seems to be getting worse. My symptoms are mainly neurological ,with fatigue, blistering rashes severe constipation and more. The severe symptoms are gone, but still not 100% Its hard to deal with especially with three boys, two of which my doc are sure have it, they are very short while my oldest is tall. My baby isnt even on the chart 16 pounds at 15 months. Wonderin if anyone experience the severe brain fog and when will it GO AWAY?