rsm

I told a doctor about the left side pain many years ago and he said. "there's nothing there". Needless to say, I have had that same pain. Mine was just under the ribs.

  spunky said:

I think during the early healing process, a lot of strange, new intestinal things can happen.

You can try taking some fiber (although this doesn't agree with some individuals, so be careful about adding it to see how your body responds) that is gentle, gluten free, such as Citricel or ground flax seeds and see if that helps. Things might get better after several months' healing time.

Also, it happens frequently that some new food intolerances tend to pop up their ugly little heads during the healing phase. Diary products and soy are two of the big ones to watch out for. You might need to avoid them entirely for awhile. Some people end up just avoiding them forever.

Hope it's better soon. My gut didn't find a normal regular routine for about 18 months.

This is good news, I'm just over 6 months and still bouncing from one extreme to another. At this point I feel so much better I don't really care but it would be nice to regulate. I will try the almond butter, peanut butter with cottonseed oil, that's most of them, is a problem for me. The paleo diet is very good.

It's been six months for me, it took a good 5 months to start to feel a little better. Give yourself time. It does get better.

No anger, just relief. Finally I can do something positive to make my health better.

I have noticed that nuts and chips and can both have cottonseed oil included. I do very well with both of these products as long as they do not contain cottonseed oil. You may have problems with another type of oil. Check the labels, I bet they both have the same type of oil in them. There are several common types used.

I have purchased some guaranteed gluten free oats but have been too afraid to try them. I love oatmeal, but raw oats have always been a problem for me. When I get the courage up I'll try them. They are very expensive! The brand I have is also Gifts of nature.

I have had problems with planters almonds because they have cottonseed oil in them. It gives me the same reaction as gluten. Might try to leave them out or get blue diamond almonds. Just a thought, cottonseed oil may not bother you at all.

I'm noticing a big difference at almost 6 months gluten free, dairy free. It was up and down before that. I also found that cotton seed oil which is used in chips and peanut butter is hard to get along with too. Give yourself a few months at least.

We have a lot in common. I worked in a bakery during high school and have been addicted to good bread my entire life. I'll be 50 in a couple of weeks and have lived "sick" for many decades. I was told as a teenager that I had an ulcer, later IBS, then pernicious anemia. Literally decades of the big "D" after every other meal. My oldest daughter made the celiac connection, both of my daughters suffer with this, and now being gluten free for almost 6 months I am seeing real changes. I am now lactose intolerant as well! This board has been a great asset and source of wisdom for me. The knowledge and encouragement has helped me get where I am now. I would probably still be suffering from hidden gluten if this board were not here to give guidance.

  ravenwoodglass said:

RSM, Those meds should NOT be giving you D!!!!! You need to check with your pharmacey asap to make sure they are gluten free.

Yes they are gluten free, it's Effexor XR. It is getting better as I get used to it. The "D" is one of it's side effects. I have only been on it for 5 weeks, not fully acclimated yet.

  Chloe77 said:

I think going gluten free would be a good idea if you really want to understand and help prevent future problems. I really wish my boyfriend would do the same. But you will find out that it is very difficult. Congratulations for toughing it through. It must be hard for our better halves that have to live with us.

Yes, my wife has been very supportive. I would have a difficult time otherwise. She does see me getting better, that helps motivate her. After 25 years of me running to the bathroom every time we went out to eat somewhere she knows how important it is. We also have 2 daughters who both have the same problem, one lives gluten free, one lives with being sick. I am fortunate to have her support, it makes all the difference. We are very limited in "going out" now. We just don't eat out much anymore. She did remark last week that she actually feels better herself on the gluten free diet.

White rice with sugar, raisins and soy milk or a baked potato help. The activated charcoal is terrific it will bind to everything and help neutralize it.

Hey Walter, almost 6 months gluten free here. I am going through depression as a by product. The doc put me on meds that give me the big "D" as well but it does get better. The anti-depressants really mess with your digestion, like we need that!

I don't know if it's habit forming but I love Ambien. I sleep like a baby. I have had insomnia problems since childhood, about 40 years. It works great.

I live in Kansas,wheat capital of the nation. Not only that, there are 2 flour mills in my town, one a block away. There is always dust in the air, we run air cleaners like mad fiends. I am looking for another job away from here but who knows when. You just do the best you can.

I like to ask "How much poison ivy would you eat?"

Self diagnosis here, both of my children have the same thing, they figured it out. 25 years for me diagnosed with IBS. Permanent nerve damage, pernicious anemia, acne into my 50's. Strange rashes, cramps, bloating, it's been a long journey. My mothers side of the family all have this.

I have been gluten free by my own choice for 5 months and am feeling way better. I'm sure there are multitudes out there suffering with no idea of what is wrong.

I too had this for a long time, about 25 years before we figured out it was gluten. I had the D for about the first half and then had C the rest. I used enemas also to get moving and stop the hours of cramping and pain. I now use miralax for a few days and it does the trick. I have only been gluten free for 5 months so I know I haven't completely healed. If I do get any gluten it feels like a punch in the stomach for 2 or 3 days with gas and rumbling. Very bad!

Baked potatoes help me.

Within a week of going gluten free, almost 5 months ago, I could not tolerate dairy. Even a small amount was very painful. You will learn quickly what you can and cannot tolerate. I have no problem with soy. Each of us is different.

  LisaJ said:

That about sums it up for me. I would feel great for a couple of weeks, then feel really sick again for a few days for no apparent reason. I would say it took about 6 months for me to feel "normal" again.

I'm the same way, it's been 4 months now, I have several weeks of feeling fine and then blam, punched in the gut. I don't see any rhyme or reason for the bad days but they last 3 or 4 days and then I'm ok again. I must stay away from dairy and some oils like cottonseed oil. You will learn as you go. Eat carefully and make notes, then you will know what bothers you. Introduce new items in slowly. The good days are really nice. Once you get used to it the diet is fairly easy.

  Nan 70 said:

I am so glad that I posted my questions. Thank you all so much for you in-put on your symptoms. Both of my feet have been tingling 24/7 for about 4 or 5 years now. Sometime buzzing in legs but that comes and goes. Loss of sensation in toes...I wake with a feeling deep inside of my chest like a vibration. If you were to put your hand on the inside wall of your refrigerator while the motor is running that is what I am feeling. Think this is how a kitten must feel inside when it purrs. Very strange, scarey.. Now I just hope I can get some of this reversed. Am taking 1,000 mcg. of VitB12 but have to look around for the sublingual kind. Even the tinitus in my ear has an electrical sound to it. RIght now my diet is rice, chicken and fruit.

Nan

Have you tried injections of B12? That really does the trick for me. You may not be absorbing much. Your diet and mine are very similar. I keep a big bowl of rice in the fridge and heat some up when needed. Baked potatoes helped sooth my tummy problems too.

I am a self diagnosed celiac, 25 years misdiagnosed as ibs. Started having nerve problems 10 years ago, numbness in legs and tingling hands. I found out I had no B12 in my system and was also tested for MS. I had and still have balance problems, slight tremor at times and slurred speech at times. I've been gluten free for 4 months and have noticed a big improvement in overall health. Don't feel alone, the gluten affects your entire system, the longer it is untreated the deeper the damage.

I have had this condition for 26 years, I'm now 49, no doctor figured it out. My grown daughter diagnosed our problem and we are both doing much better gluten free. I have been told many, many times it's stress, been put on tranquilizers, told to eat wheat bran, drink wine, take a hot bath and try to relax. I've had my gall bladder removed, been on b-12 for over a decade, been tested for ms and just generally run through a maze by 6 or 7 doctors and have not found one yet who knows anything about this. I told my current doctor I was gluten free and thought I was a celiac, he said he was impressed, didn't see much of that anymore, it's not in vogue right now. Anyway, he thought the diet was a good idea. I have learned more here than anywhere else. After 4 months gluten free I'm starting to feel like a normal person again.

None of us are diagnosed but the family "stomach" trouble runs through my mothers side of the family. A mixture of English, Irish and Scotch.

My grandfather had severe digestive problem with the big "D" his whole life, he joked about it but he did die of cancer. My mother and her siblings have it to varying degrees, some are lactose intolerant as well. I have it and now my two daughters have it. Only my oldest daughter and myself are gluten free, her six months, me four months, I feel so much better it's almost unbelievable. No one else wants to try the gluten free, one aunt is zero carbs but that can still mean gluten. I'm better anyway!