New - Celiac Or Not?

[cfritz]

Hi,

I'm fairly new a this site and will tell you a bit of my history. I got very sick a few years ago and lost a very large amount of weight, pretty much skin and bones. Alot of stomach problems, constipation and diarrhea. The main culprit was acid reflux.

I went to a GI who did test after test, tubes down my throat, etc. A few years before getting really sick my GI did send me for a biopsy for celiac because my blood work showed signs of this. But my biopsy came back negative. So when I went back 2 yrs later I asked him to repeat the biopsy and he refused. At the time I was still on gluten, and now I'll never know for sure. I had absolutely no luck with any of my doctors that I went to. I had to think of alternatives.

I went gluten-free after finally seeing a Naturopathic Dr. I gained 15 pds back within a month or so. But since then a haven't gained a pound. I weight about 110 now.

I definitely feel like a new person once I got my reflux problem and bowels under control. But after 2 yrs I still get constipated at times. I think the rice constipates me alot. I do still eat lays ripple chips, almost every night, cause I'm starving ( hopefully I'm not getting contaminated from them). I also worry about cholesterol.

I have a very limited diet since going to the Naturalpathic Dr. He deals with food allergies and has taken my off alot of goods. I only eat brown rice, potatoes, most vegetables, a bit of fruit, beef, turkey, butter, salt, rice cakes. For treats I eat lays chips, drink pepsi, taste of wine or rum. Mostly I'm scared to try anything new. I am still very very skinny. I lost all my muscle fat.

All I want to do is gain a bit more weight, and have a little more variety of food.

I really could handle being Celiac, but its very tough with all my food limitations.

If I happen to accidently contaminate my food somehow, I get very dizzy and feel nausated. I basically sick for anywhere from 1 - 3 weeks. Real crappy-Flu-like symptoms.

I still get frustrated after almost 2 years of gluten-free, but do feel so much better than I did. I honestly thought I was dying, I was so sick. At times I wonder if its all in my head and other times I know this is very real. The hardest part of all is not knowing whats wrong with me. If I knew I was celiac then I could deal with it, but not knowing is the hardest part of all.

Thanks for listening,

Carla

[FaithInScienceToo]

Dear Carla,

We are listening...you are loved here...

You will receive a lot of good advice, and hear that others have had similar experiences...

Many of us have also had worries that we might find out that we were dying while in the midst of our worst Celiac stages...I had vague concerns over the years that a doc would discover some sort of weird cancer in me before I learned that it was 'just' an auto-immune disorder from gluten... It was a relief to learn that there was a concrete reason for my poor health, and my inability to gain muscle mass...I am 5'9", and at my very worst stage weighed only 112. I weigh about 126 now and feel normal...

I am sad, though. to hear that your diet is SO restricted. It would be very hard to get fully well on such a diet, I imagine...

Personally, I am not fond of 'natruopathic-only-type' docs, as the only doc to ever tell me to not eat gluten was an Internal Medicine MD, who only prescribed natural supplements, etc...

Sounds great, huh?..unfortunately, he neglected to ever mention the word Celiac, or to do any testing...apparently, he just told everyone who came to him with fibromyalgia 'no gluten, no this, no that, etc' without ANY testing of any kind, or explanations...Since I just ended up thinking he was more of a health nut than I was and that he only wanted to sell me an insane amount of supplements, I didn't do what he said...until years later, when I finally researched gluten to find out why he even mentioned it...that's when I, on my own, learned about the connection between it and fibromyalgia mis?-diagnoses, via this wonderful Net!

Anyway, I know that a lot of us still have some symptoms after going gluten-free - I have a few that I am determined to hunt down the cause of...I feel that I have some lingering food sensitivities/allergies and have just ordered the finger 'pin-prick' lab tests from York labs. Have you heard of it? You can google for info on it...

Gina

[cfritz]

Thanks Gina for your quick reply. I really appreciate your kind thoughts and opinions. Its nice to hear from someone that has been going through the same sort of thing and makes me feel a little more normal. Regarding medical drs, I think I just happened to have bad luck with the GI I went to, my family dr has no doubt I have celiac disease. Its just me that has a hard excepting it without evidence.

I have a question regarding your fibromyalgia . My sister has it soo bad. She is in pain 24/7. Mostly really bad headaches and alot of head and shoulder pain. I have repeatly told her to eliminate some foods from her diet and maybe that would help her. But she just believes its a disc problem in her neck. What kind of symptoms did you have and did gluten-free take all the symptoms away?

Carla

[plantime]

Since you eat potato chips at night because you are starving, try fixing another small meal, instead. Sometimes a little protein will stop the hunger pangs. Maybe your food is too limited. While you may need to limit >what< food you eat, I do not see a reason to limit ho much you eat. You will not put on needed weight if your calories are too restricted. Did your Naturopath tell you which foods to avoid, and why? If you only need to avoid gluten, then there are so many new foods for you to try! As far as having no evidence of having celiac because you have no positive biopsy, improvement on a glutenfree diet is considered conclusive by a scientist. The diet change itself is a test. No damage on a biopsy only says that your intestines have not yet been damaged, not that you don't have celiac.

[FaithInScienceToo]

I have a question regarding your fibromyalgia  . My sister has it soo bad. She is in pain 24/7. Mostly really bad headaches and alot of head and shoulder pain. I have repeatly told her to eliminate some foods from her diet and maybe that would help her. But she just believes its a disc problem in her neck. What kind of symptoms did you have and did gluten-free take all the symptoms away?

Carla

Hi, Carla,

The symptoms of fibromyalgia I had included:

Most 'irritating' symptom:

jaw pain -

Note, this led to how I came to be diagnosed 'fibromyalgic'... I thought I had TMJ - temporomandibular joint disorder, so I saw a TMJ expert/dentist, who told me he thought it might be fibromyalgia, since my bite alignment was perfect on x-ray...he referred me to a rheumotologist, who did the "tender-point testing" along with a symptom history - I was found to be positive for reported pain on 14 of the 18 tender points, and negative at all control points - You get diagnosed with fibromyalgia if you are positive on at least 11 of the 18, and negative on most or all control points.

Most debilitating symptoms of fibromyalgia I suffered from pre going gluten-free:

FATIGUE, and general muscle/joint pain - pretty much all over my body, but especially at the tender points. These symptoms have subsided tremendously since going gluten-free - the diffference is like night and day, really.

I, too, had a lot of shoulder pain. I still have some, but MUCH less since going gluten-free, as my pain was/is complicated by 2 bulging disc in the cervical region of my neck, from a very bad bike accident at age 20 - I am now 47. I have had steroid shots for the problem and do some physical therapy on my own which seems to keep it under control, and I also now take glucosamine daily - it really works to repair joint problems - it is the only supplement proven to help rebuild cartilage.

Brain fog is also one of the classic 'fibromyalgia' symptoms - Going gluten-free has greatly lessened this symptom, too

Unlike your sis, I never had any serious headaches...not sure if that is considered to be a classic fibromyalgia symptom or not...

Well - what I would like to suggest is that your sis, and you, get tested for food allergies, instead of trying to 'guess' at what might be causing the problems...I think it is best to have as much scientific info as possible, along with listening to your body. Also, if your sis hasn't been blood tested for Celiac disease via 'the Celiac blood panel,' she should be, since you have had a very positive response to a gluten-free diet, indicating that you either have Celiac disease or a severe gluten-intolerance, which is just as 'serious' as Celiac disease, in terms of the ill-efffects on one's health, in my opinion.

Hope this add'l info helps you and your sis in some way -

Best wishes,

Gina

[tarnalberry]

Perhaps if you can list what foods you are avoiding, we can help get you a list of all the things you CAN eat. You may be limiting more than you need to, and even with those items, you can get a creative range of different foods to get plenty of calories in you - with some effort. Do you know how many calories a day you're eating right now?

[GFManiac]

Have you been tested for food allergies? It is possible that you don't have celiac, but do have an allergy to wheat and probably some other foods also. I would make an appointment with an allergist if you haven't already.

[missla3000]

Hy carla - listen you are not alone in this!!!!!!!!!! I am the same - every day is a struggle for me and have only been gluten-free for 5 days and already seeing an amazing improvement!! If I were you If the doctors will not listen - get as much advice and knowledge as you can - and treat yourself - note everything that makes you feel bad - including drinks and supplements. I was taking pill after pill to make me feel better - luckily my doctors are great here in the uk (we pay our taxes to they should be!) and they wont stop till they find out whats wrong.

I have been there too - I am still underweight and I thought I had anorexia as I got scared to eat anything as Id rather be hungry than in pain! its really awful and its not in your head! We are not hyperchondriacs at all - althought this thing does make you a bit self absorbed, its not in your head.... I hope you feel better soon love and that you find some variety in your diet. Can you have yoghurts as these are great for calcium and will help your weight - they are usually easy to digest.

[Lesliean]

My initial presenting symptoms was reflux problems and breathing problems. What blood work did you do 2 years ago? If it was positive for Celiacs and you responded to the diet then you have Celiac disease. Maybe that would be a comfort to you to know that the biopsy tells you the amount of intestinal damage but is not always recommended now for diagnosis with the blood tests being plenty of evidence. You sound like you need to check out some of your safe foods and make sure you are not getting small amounts of gluten still. I have slowly built up a safe foods list and know what to reach for when I am really behind on calories. Like avodado dip and Que Pasa corn chips, mixed dried fruit and nuts, gluten free almond butter/banana sandwiches, fudge made from Red Mill's brownie mix...

It's a learning curve but the benefits outweight the challenges and we are here to hear you. Try this link for more ideas. https://www.celiac.com/st_sresults.html and

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