Backtracking! Frustrated!

[dbuhl79]

As you can see by my tag line I have not been officially gluten-free very long. In fact today is day #5. Beginning Saturday I felt like a new person! No more abdominal pain, no more frequent BMs or diarrhea. I was delighted to say the least and feeling much less crazy!

Now I have been extremely careful in my attempts to stay gluten-free with my diet. I have checked all labels and when doubted completely avoided the product in question. I know I've read on this forum many times that it takes a long time for the digestive system to repair itself and return to normal when going gluten-free (why many people avoid dairy in the beginning as I'm doing also). So perhaps this explains my sudden twice urgent trips to the restroom this morning. I feel like I've completely spun back into the evil spell of an upset digestive track.

Could it be that my digestive system is still trying to recover (even though I felt very improved) that it didn't tolerate some of the gluten-free foods I've eaten this past weekend?

I suppose my other confusion is that nobody has officially said you've got celiac disease. In fact my blood tests came up negative for gluten sensitivity. Nor has my GI specialist attempted to follow-up beyond this blood test. (So much for a thorough caring doctor, as she had mentioned potential crohns, colitis, and IBS along with celiac disease).

Has anyone had their symptoms carry on for quite awhile when initially going gluten-free? I know it wasn't a magic cure all for everything, but after such a blissful weekend, this is so disappointing!

Thanks so much to all of you that reply. I really need some support right now, the bathroom runs are just devastating and taking so much time from my day.

[billfl]

Stick with the gluten-free diet....I had "relapses" several times during the first few weeks after going on a gluten-free diet, and I also had been very careful not to ingest any gluten. It took about a 3 - 4 weeks before I was confident that the diarrhea portion of my problem had been resolved.

[lovegrov]

Five days isn't enough time to heal anything. I'd say what you're experiencing isn't unusual at all.

richard

[dbuhl79]

Thanks. I appreciate the reassurance. I knew 5 days wasn't enough to do much, but ooh the misery of it all!

[tarnalberry]

Don't forget that you can get upset stomachs and "disturbed digestive tracts" for other reasons. Sometimes a food just doesn't settle well with a person.

[OhNoes]

Some foods that are especially harder to digest are corn, pork (including bacon) and legumes. Might be best to avoid foods like that (and any others you seem to have problems with) just until your gut gets a little stronger. I'm really new to this too, and have found that eating simple foods are gentler on my gut.

[Guest barbara3675]

It took a few weeks for the tummy tenderness and the bloaty/gassy pain to go away when going gluten-free and cf, but it took a few months to get the constipation/diarrhea to resolve itself. Everyone is different, so you must stick with the gluten free eating for quite awhile before you will get results. As they said before, often an intolerance to cow's milk can go along with this as was revealed to me when I was tested by Enterolab. It was when I went casein free in addition to gluten-free that things really started to heal. Be patient and true to both and you will finally see results. Barbara

[Rikki Tikki]

Be patient you will heal. Also, be sure to check all of your medications aganist the gluten free list to be sure you are not getting gluten that way.

Good luck and any time you want to talk we are here!

[lilliexx]

I am a bit confused by this. If your gluten sensitivity test came back negative, why are you convinced you have celiac disease? were there other tests? I think a blood test from your doctor would probably be pretty acurate. stomach problems can be caused by so many different things, and it could be something quite serious so i'm not sure if self diagnosis is something you should be doing. why dont you do an elimination diet ( becuz you may have another intolerence) and also have you doctor run other tests if she hasnt already.

I hope you figure everything out, i know how terrible it is to be sick and not know what is wrong.

take care, lillie

[dbuhl79]

Llillexx,

Yes thats correct, my blood tests came back negative, or rather "within normal ranges".

Prior to going to my GI specialist I had taken gluten out of my diet for a week and began to feel normal again and a lot of relief. After reintroducing it to my diet I received the same symptoms. I had already attempted eliminate other foods such as dairy etc, per my doctors recommendation. I received no relief from these attempts except for gluten.

Granted I realize I could simply have a sensitivty to wheat alone, or other minor items that would be taken out by taking out gluten from my diet. I wouldn't go as far as to say its a self diagnosis, but I know I was suffering miserably from eating those types of foods. I intend to remove it from my diet from a month and reintroduce items slowly to see if this truly causes a reaction.

I do NOT recommend anyone self-diagnose, and do not believe I have celiac disease unless I am tested positive for it. What I do know, is simply this, by removing these items from my diet, I have no abdominal pain and aside from the bout of diarrhea recently a few days ago, I have had regular bowel movements. So we'll see at months end what my results are from reintroducing gluten again.

I can live without it. I can not however live and function a full life with the digestive issues I had before.

Thanks for your help hints though, I do appreciate everyones input. And I may eventually seek another GI's assistance in propertly diagnosing what sensitivity I have. But at the moment, I can eat again, and not be miserable, and quite frankly, I'm burnt on seeing doctors. (which I've been doing since last December..)

Happy Holiday !

[tarnalberry]

I'd like to note, for the naysayers, that what you did - trying the diet, then challenging with the potential offending item again - is a valid diagnostic test (one of many) that allergists do use for difficult to pinpoint food allergies. They tend to do it in the office and are looking for quicker reacting IgE allergies, but that was the third step in the series of tests the allergist's nurse described to me. Of course, I'm not trying to say it is the same as an official diagnosis, but there is some respect due to that method. I'm glad you've got the confidence to do what you need to do in order to feel better! :-)

[Rikki Tikki]

Dear dubhl179

I think that what may of happened is that you took the gluten out of your diet prior to the test so the blood work came back fine. (this is only a theory) As awful as it is to get sick if it were me I would put it back in and then have the blood work done.

Then the biopsy, which this soon in the process should show damaged villi.

I am glad that whatever is wrong that you are now feeling better and I hope you continue to feel good.

If I wanted to be sure I would re-introduce it, have the blood work and then the biopsy.

When I had the blood work I had no idea they were looking for this, had I of known this disease was so common and not rare as my doctor seemed to think I would of known about ten years before the diagnosis. The blood test came back at that time showing high levels but my doctor did not do further testing for it because he thought it was so "rare" it couldn't be celiac.

This disease causes so many other problems that my the time I found out my bones were damaged, I had virtually no vitamins in my system and was very weak. I also spent seven days in the hospital trying to get my health stabilized.

I still struggle with my health, weakness, weight loss and a sense of general ill-feeling. I also had pre-cancerous polops removed from my colon.

Please don't feel upset that you were tested without your knowledge, I am sure they were looking for many different possibilities.

I hope you continue to feel good.

[strack2004]

In line with doing an elimination diet, I'd suggest keeping a food diary and checking it regularly against previous entries. You would also need to keep a record of symptoms experienced day to day and medications. I also record how much water and/or tea I drink and happenings during each day that may have been particularly stressful. I also had my blood work come back negative. I feel that this SCD diet ( selected carbohydrates diet) is a healthful one. And also a good starting place for an elimination diet. I am trying to do the elimination diet thing, but need to get down to business and really work at it - set aside a time of day to really evaluate what I have written down . I have constipation related ibs. Mine may be aggravated by adhesions from previous surgeries. On th diet I have lost weight, have more energy and sleep better. I have been on nearly 4 months now. Like you, I experienced a definite improvement at first, but that has gone back to the same old constipation problem. I do not intend to abandon the diet, however not even at theholidays. Hang in there! Cheers. Ruth p.s. Am also experimenting with enzyme preparations

[celiac3270]

Some foods that are especially harder to digest are corn, pork (including bacon) and legumes. Might be best to avoid foods like that (and any others you seem to have problems with) just until your gut gets a little stronger. I'm really new to this too, and have found that eating simple foods are gentler on my gut.

Oh, pork is hard to digest? I knew about the sugars in fruits, but can you give me a more extensive list, if possible? I don't eat much corn or legumes--but pork once or twice a week. Thanks--I'm trying to do everything I can--9 months is a long time to be on a strictly gluten-free diet and be just as sick. I know that accidental gluten is' thte culprit (biopsy done 1-2 months ago showed that my villi were grown back...but my stomach is still raw, red, and tender).

[dbuhl79]

Thanks for the additional tips guys! If all else fails I will seek another doctor. However, for now.. I'm content with investigating on my own and w/ the help of e-friends!

Thanks again..

[wclemens]

Hi,

I'm so sorry you're experiencing distress again, after trying so hard to eat gluten free. I exhausted all my savings on doctors and hospitals, trying to discover the keys to good health, yet suffering with ill-health, for many years. Then I decided that I knew my reactions to foods pretty well, and started eliminating foods, with the purpose of finding which worked well for me and which didn't.

All grains, all milk and dairy products (including casein and whey), egg whites, and yeast proved to be my undoing. Maybe this will help you as you decide which foods to eliminate. Best wishes in your quest for healthy living. We're all going through the same sufferings, and can identify with your pain! Welda

[Deby]

I'm self diagnosed too. I've been gluten-free for 3 years, will be 4 in March. I wouldn't go back to a gluten containing diet for anything. I had celiac disease for 14 years without knowing it and thought I was dying (I likely was!) I had improvment right off but this is hindsight observation. Real relief came after a month. Now, almost 4 years later I still don't have a complete return to my pre celiac disease self, but I'll take what I have.

Keep going on your diet and when the temptation comes to eat gluten again, DON'T give in. That's the biggest challange IMO when one is self-diagnosed.

Monica

[darlindeb25]

this is my opinion and only mine but as far as i am concerned, pork is given a bad reputation---pork is much easier for me to digest then beef is--pork is the other white meat and i wil continue to eat pork--i never eat beef unless i crave a burger--otherwise, i never eat it--pork, chicken, and fish and i never eat the dark meat of chicken--only white---but, that's just me deb

[mela14]

Where can you check medications against the gluten free list?

I was given axanax by my dr and got deathly sick on it. frst heart palpatations, then sweating, dizzy, weak, sour tummy and gut. i felt like i had swallowed poison. I was out of it the entire next day...non-functional and in bed. I definately reacted to something in it. I am also soy, egg and peanut intolerant.

They make me sooooooooo sick, bloated and lots of pain in the gut!

[darlindeb25]

i'm not sure about that drug---it is so close to another drug spelling--did you mean xanax because xanax is gluten-free, i know it is, i have taken it before--if it is spelled axanax, then i couldnt find it on my gluten-free listing---try the meds listing in www.clanthompson.com maybe you can find it there, otherwise you will have to call the manufacture and ask---and remember, we celiacs can have the same side effects from a drug as anyone else and it doesnt have to have anything to do with gluten----xanax, if given too much can cause heart palpitations, sweating, and dizziness, i know because i took too much one time, i was very upset and forgot i had taken it--your best bet is calling the manufacture deb