Thought I Was A Newbie...maybe Not?

[indigo1213]

Here's the thing: about 4 months ago I went to my general physician with complaints of bloating, extreme gas, and varying degrees of diarrhea or constipation, and cramping, whenever I ate pizza, white bread, pasta or beer. It was horrible. I felt so gross all of the time.

Ignoring the issues of I have with bread or pasta, my doctor immediately asked me if I drank milk. I said I did -- skim milk -- with my breakfast cereal in the mornings, and then sometimes a glass here or there, depending on what I was eating. I should also mention that at this time I was also dieting and drinking Slim Fast shakes for lunch -- and those, too, would give me horrible cramping, bloating and gas, and sometimes diarrrhea/constipation.

My doc told me to remove all dairy from my diet and immediately diagnosed me as lactose intolerant. She also ordered up a bunch of ultrasounds to look at my gall bladder and my stomach to make sure nothing else was going on. To be thorough, she scheduled a GI appointment for me at the end of this month.

The ultrasounds came back clean. I took myself off milk and milk products -- and I feel a lot better. And before eating anything that may contain dairy, I would pop a Lactaid pill before eating.

But I still can't eat pasta, or white bread or pizza. I even had a reaction to sushi the other night. I had maki, white rice, soy sauce and wasabe. I only had water to drink. Within a 1/2 - 1 hour my stomach was gurgling, extended, and I felt the gas coming on. I hate that bloated feeling.

I have friends who have IBS and I've described my symptoms to them and they have all said it didn't seem to be that -- that IBS is much more violent of a reaction after eating something that's a trigger. So, I came to the conclusion that I must have celiac or have a gluten intolerance.

But now I'm reading all of your postings on this thread and I don't have any of the aches or pains or tingling sensations like you guys experience. I'm not losing weight -- in fact I gained a whole bunch of weight in the last nine months. The only pain I've experienced is leg cramps sometimes while I sleep but I've chocked that up to bad running sneakers or just over-exerting myself when I work out.

Like I said I have that GI appointment at the end of this month so I'll find out then, I'm hoping. I guess I just wanted to see if any of you had any feedback.

Thanks,

Julianne.

[CarlaB]

Welcome!

Julianne, celiac and gluten intolerance symptoms vary a lot from person to person. I happened to lose a lot of weight, but others have gained. I had lots of IBS symptoms and gas, but others have bloating and cramping. It's different for each of us. I would insist that your GI do the FULL celiac panel. Many just test the IgA. If the blood test comes back negative, realize that many times there is a false negative and see what you dietary response is. It's really important that you DO NOT stop eating gluten until after the tests are all completed.

A lot of celiacs are lactose intolerant as well.

[indigo1213]

Wow, thanks Carla. That was very helpful. I'm going to be sure to not be so stringent on cutting gluten out of my diet until my GI appointment so I'll get a true reading. I just want to figure out what's going on so I can start taking precautions.

Thanks, again!

  CarlaB said:

Welcome!

Julianne, celiac and gluten intolerance symptoms vary a lot from person to person. I happened to lose a lot of weight, but others have gained. I had lots of IBS symptoms and gas, but others have bloating and cramping. It's different for each of us. I would insist that your GI do the FULL celiac panel. Many just test the IgA. If the blood test comes back negative, realize that many times there is a false negative and see what you dietary response is. It's really important that you DO NOT stop eating gluten until after the tests are all completed.

A lot of celiacs are lactose intolerant as well.

[Nantzie]

Everyone with celiac or gluten intolerance has different reactions. The tests can only tell you so much because there are often false negatives. The only way to really know if you have a problem with gluten or not is to give the gluten-free diet a shot. I had negative blood tests and negative biopsy, but I gave it a shot and my life completely changed. Your GI symptoms sound exactly like mine. The worst was EXTREME gas. So embarassing.

I also was gaining weight. I had a point a few years ago where I was walking 5-6 miles 3-4 times a week and was still not losing weight. It was ridiculous. Then after I had my son, the pain symptoms started and I couldn't even walk for exercise anymore. Gained quite a bit of weight at that point, along with all the GI symptoms. It was awful. Since going gluten-free in January, not doing anything else, I've lost 30 pounds. But I would have gladly gained 50 if it meant feeling this healthy.

Interestingly enough, the only diet that ever helped while I was sick was the 6-week Body Makeover, which is no sugar, no salt, no WHEAT, no dairy and no oil.

I'm just so glad that I decided to try the gluten-free diet and then report my findings back to my doctor rather than just go based on the test results. If I hadn't, I would have still been trapped in that sick body.

So once your tests are done, regardless of the results, just give it a try. It can't hurt. And it just might change your life.

Nancy

[Ursa Major]

Julianne, I had the same symptoms as you until last year, when suddenly (while doing a bowel cleanse, which apparently put me over the edge) I got the 'classic' celiac disease symptoms. Still, I was gaining weight! Even during the six months with chronic, watery diarrhea I was still gaining.

My doctor didn't test me, because she thought that since I was gaining, it couldn't be celiac disease. I have a new naturopath. When I told him about that, he only rolled his eyes and said, 'Unbelievable, doesn't she know that weight gain is one of the symptoms of malnutrition?' (she does now, I made sure of that )

So, yes, it sounds like you may have celiac disease as well as a dairy intolerance.

[tarnalberry]

As has been noted, many people have different reactions. The fact that you notice symptoms a few hours after eating gluten-filled products is a sign! It's certainly worth getting testing (if you're still eating gluten) and doing a dietary challenge after getting tested.

[Terch]

Hi,

I have a question about this thread. If you all have had negative scopes and or no scopes and your family doctors don't agree that you have celiacs or gluten intolerance how did you manage to stay on the diet for so long? I always thought I was a patient person and this is week three for me gluten-free and I see no improvement as yet. So how do I know that this is what I am battling? How long should I give it? I know there are no magic numbers or answers but for some reason I feel the need to have some time frame. I feel lousy, I feel tired and and I want to know that I am moving in the right direction. How did you know that this is what was making you ill? I feel like I am getting worse and it scares me that maybe I am wasting time. Also did anyone have any trouble passing gas, and not belching, that I do with a great degree of skill. It's revolting really, but from the other end. I feel each evening if I could just pass gas I would feel better but it seems to be trapped and I feel like a pin ball machine in there. Also I have never noticed any symptoms of gluten intolerance after I ate bread. No quick onset of symptoms, is that normal?

[AndreaB]

Terch,

I didn't really have symtpoms before going gluten free. I had allergy/intolerance testing and then enterolab testing which showed an active sensitivity to gluten. I would suggest testing to nail down what may be problems areas for you. Enterolab only tests for a few foods right now, but from what I understand, if you are 10 or over in your results, it's a lifelong free of that food. ELISA testing would give you an idea of what could be causing problems, with the option of adding them back in after a time (one at a time) to see if you have a reaction. Some reactions take 2 days to manifest and can take up to 2 days until you feel better after that. If you don't have the funds to have testing done then I would suggest a simpler diet free from dairy, soy and processed foods and see if that makes a difference. Have you had any tests run by doctors?

[Fiddle-Faddle]

Terch:

It's easy for me to stay on the gluten-free diet. I had relatively mild symptoms before going on it--but I didn't realize I had them til the symptoms went away, and boy, was that great! Nothing like feeling well to add incentive....

Are you sure you've eliminated "hidden" gluten, such as what might be in your soy sauce, light ice cream, salad dressing, etc? IF you're sure, then maybe you have other food intolerances? Don't freak out--seems like a lot of people's other food intolerances level off after they've been gluten-free for a while.

[Terch]

Hi Andrea and Fiddle Faddle,

I have eliminated gluten, dairy, and soy from my diet. I am pretty confident that I have eliminated all gluten as I am only eating fresh veggies, rice, salads and chicken. I am cooking the food all on my own and not using any sauces on my food. I am also using the gluten free Renee's dressing which I believe is only available in Canada. The chicken part is tough because I have always been a vegetarian.

I had an endoscopy 4 weeks ago and see my gi on Friday for the results. To the best of my knowledge he did not do any bloodwork on me prior to the endoscopy but told me that from what my symptoms sound like he was going to take some biopsies and to check for Celiacs as well as look at my stomach and esophagus for lesions etc.

I only came to this site after my gi mentioned the Celiacs so I don't even know if I have it or not. I just know that I don't feel better yet and although I don't expect a miracle I wondered if anyone had personal time frames for when they noticed an improvement and whether or not I should also do some testing with Enterolab. Thank you for you words of encouragement and advice, and I am awed by the dedication you all have to helping each other out.

Thanks.

[AndreaB]

Terch,

Enterolab would be a good idea if you have negative bloodwork. If you haven't had that done and are gluten free then you may have negative bloodwork. I would definately have your doctor run tests if he/she thinks other things may be going on. From what I've read on this board some people took up to 2 years to feel better.

Do you take a multi vitamin? Do you take any meds? Do you eat eggs? If you aren't getting much protein then that could make you tired. I have problems with beans and no longer eat them. I'm intolerant to a few that were tested. I used to be a vegan (for 3 years) and vegetarian (about 6 years) before that. I was raised a meat eater so it wasn't hard for me to go back. Beans cause gassiness as I'm sure you know. Don't know if you eat them, or eat them alot.

If you are going to have bloodwork done, get it done quickly, although enterolab sounds like it may be a step for you to take since you are gluten free. Have you checked personal care products, non stick pans, collanders, toaster. There could be any number of things that could be keeping you down from cc issues to other intolerances. Enterolab tests for gluten antibodies, ttg, malabsorption and gene test in one package (dairy may still be included in that). They also test for soy, egg and yeast. Check out their site if you haven't yet...Open Original Shared Link.

[Fiddle-Faddle]

4 weeks til you get results from the endoscopy? Wow. That must feel like forever.

Sorry you're not feeling better--I hope you get answers soon from someone somewhere! Sorry I couldn't be of any help.

A couple of people on this board have been intolerant to rice and certain vegies, of all things. If you can find Ursula, she is a goldmine of information--she's been through an awful lot, and has done an amazing amount of research.

Good luck--let us all know how everything turns out, okay?

[tracey*]

Make sure you exchange soy sauce for tamari instead - soy sauce has wheat in it

Good luck x

[Guest nini]

it took me six months to START feeling better, and two years to feel almost human... I'm three and a half years into this and still feel like crap a lot of the time. I'm suspecting other food intolerances but at this point I haven't tried to figure out what they are... too overwhelmed with life in general (I lost my job of five years in March and have been trying to start over)... it sounds like at the very least you could be gluten intolerant, but there are probably other intolerances or other issues going on, keep searching and don't give up.

[Fiddle-Faddle]

  tracey* said:

Make sure you exchange soy sauce for tamari instead - soy sauce has wheat in it

Good luck x

Except for La Choy brand soy sauce--which does NOT have wheat (at least, my bottle doesn't)!

[Estacee]

I LOVE sushi and I eat it multiple times a week. I always have a reaction to the soy sauce at the restaurants. I'm getting used to taking my own with me. I need to get a bigger purse!

I hope this helps!

[tracey*]

  Fiddle-Faddle said:

Except for La Choy brand soy sauce--which does NOT have wheat (at least, my bottle doesn't)!

Ahh see, I don't think we have that brand here - so far I haven't come across any wheat-free soy sauce.

Doesn't matter, Tamari is just as good (and even better!)

[Guest nini]

  tracey* said:

Ahh see, I don't think we have that brand here - so far I haven't come across any wheat-free soy sauce.

Doesn't matter, Tamari is just as good (and even better!)

Do you have a WalMart near you? Their Great Value brand soy sauce is clearly labeled gluten free if you look near the ingredient statement!

[tracey*]

Nini, I'm in Australia - so the nearest Walmart is ... in Hawaii? lol

[mommida]

Always double check the label because some tamari has gluten in it and companies change the ingredients of products you thought were gluten free.

L

[Guest nini]

  tracey* said:

Nini, I'm in Australia - so the nearest Walmart is ... in Hawaii? lol

oh oops!

sorry, can't help you there!