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Should I Be Tested, Or Just Try The Diet?

1sickscooby

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1sickscooby Newbie
1sickscooby
Posted

I am really new to all of this. My uncle was diagnosed with Celiac Sprue (sp?) when I was about 16 or so. I am now 24 and wondering if I do not have the same problem. I had a time when I was 15 or so that I lost 30lbs in 3 months because everytime I tried to eat anything (or so it seemed) I would eat three bites and then feel like I was going to get sick. I ended going to a GI doctor who did an upper Endoscopy and took some biopsies that came back fine or negative (nothing was wrong at any rate). Ever since I was a young child, I have had many problem with upset stomachs. Even to this day I have frequent upset stomachs. Recently I have been getting sick to my stomach after I eat. I have noticed it happens more when I have been eating flour-based products. The more bread etc. I eat, the worse it seems to get. I have also had very loose bowl movements for many years. I talked to my GP doctor about it once and he said it sounded like I had IBS and left it at that. He hasn't done any testing about it. I was diagnosed with Epilepsey when I was 15 and a half and they cannot figure out why I have it (an article on here seems to point to a link). Recently, I have started getting my stomach problems on a more frequent basis. I have also been having mild hot flashes for years and did not realize it. I have started having night sweats as well. I have migraine headaches and have been diagnosed with clinical depression. I also have pain almost everyday of my life. My back and neck usually hurt the worse, but my hips and knees do not feel too good either. I never thought about having Celiac disease until recently because I am obese and I thought you only lost weight with Celiac. I plan on getting tested, but was hoping to get some opinions from other people on how I should proceed.

Thank you for taking the time to read this really long post.

Amanda

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

If you are going to get tested you need to do it before trying the diet. If you try the diet and it works then you cannot be tested without subjecting yourself to eating large quantities of gluten again for about three months. The tests will not be accurate if you have not been eating gluten. Tests also have about a 20% false negative rate, so try the diet even if your tests come back negative. You can get the blood test and biopsy and then go gluten free before you even get the results back if you want. If your current GI refuses to test you and just insists it's "IBS" then find a new doctor.

WheatChef Apprentice
WheatChef
Posted

If you suspect that you may have a gluten intolerance, you get tested and the results come back positive then you need to go on a gluten-free diet. If you suspect that you may have a gluten intolerance, you get tested and the results come back negative then you need to try a gluten-free diet to see if it has an effect.

It's more a personal decision really, the best test available is whether or not you respond to a gluten-free diet. The tests are more so that your doctors can feel important.

rosetapper23 Explorer
rosetapper23
Posted

Your story sounds consistent with celiac or gluten sensitivity--please follow a gluten-free diet for a while to see if you feel better. Also, the hot flashes might be related to a thyroid condition associated with celiac: Hashimoto's. It can also cause pain in the joints, so this sounds like a possibility in your case.

Also, regarding your concern that people who are obese probably don't have celiac, this is incorrect. Although some people with celiac are thin, most are overweight. Celiac causes a problem with fat metabolism, and this throws doctors all the time. They also think that a person has to be underweight to have celiac.

1sickscooby Newbie
1sickscooby
Posted
  • Author

Your story sounds consistent with celiac or gluten sensitivity--please follow a gluten-free diet for a while to see if you feel better. Also, the hot flashes might be related to a thyroid condition associated with celiac: Hashimoto's. It can also cause pain in the joints, so this sounds like a possibility in your case.

Also, regarding your concern that people who are obese probably don't have celiac, this is incorrect. Although some people with celiac are thin, most are overweight. Celiac causes a problem with fat metabolism, and this throws doctors all the time. They also think that a person has to be underweight to have celiac.

Thanks for the information. I never knew I might have a thyroid condition. A great wealth of information is now at my fingertips and I can hopefully figure out what has been happening to me. I will be going to my doctor shortly. Thank you everyone for the input.

eatmeat4good Enthusiast
eatmeat4good
Posted

I gained a massive amount of weight during the years I was sick. All you have described is consistent with Celiac. I just wanted to let you know the weight gain is a symptom also, even though many Dr.'s will say it is only weight loss. I went up from 120 to 200 lbs in 6 months. Every 25 lbs. I went to the Dr. and described this horrifying weight gain and yet having the inablity to eat. They don't believe it, or they think you are a hypochondriac, or you really are eating too much and lying? I don't know. Three months gluten free I am back down to 120....but it lasted 7 years. I didn't get tested I just went gluten free. I couldn't get anyone to take my symptoms seriously enough to agree to test me. Gluten free diet is 100% accurate..if your symptoms go away, that is your problem. If you want to get tested, do so as soon as possible so you can get well. If you are certain this is it and you don't need the "proof" then Just Do It. Good luck

1sickscooby Newbie
1sickscooby
Posted
  • Author

Just remembered that I went to a GI doctor when I was really sick as a teenager. He did an upper endoscopy and took biopsies (sp?) of my small intestine. He told me that they came back normal. I cannot remember if he did any blood testing, but I would think he would before performing an endoscopy. Not sure if this helps or hurts my theory at this point.

It would make the most sense to me if he had blood work and it came back elevated then did an endoscopy. I do not even remember the name of the doctor because after the visit where I got my results, I stopped seeing him because I did not feel he was taking me seriously.

Any thoughts, comments, or opinions would be greatly appreciated.

As a side note. I have been getting sick to my stomach lately about an hour to an hour and a half after eating products containing gluten. I found Chex cereal was gluten free when I went to the store. I am so tired of getting sick everytime I eat that I bought some rice chex and had some for dinner. I do not eat my cereal with milk because I seem to be lactose intolerent (never actually tested for it). Dinner was almost three hours ago and I have not been sick to my stomach since.

Thanks for all of your help and answers.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Just remembered that I went to a GI doctor when I was really sick as a teenager. He did an upper endoscopy and took biopsies (sp?) of my small intestine. He told me that they came back normal. I cannot remember if he did any blood testing, but I would think he would before performing an endoscopy. Not sure if this helps or hurts my theory at this point.

It would make the most sense to me if he had blood work and it came back elevated then did an endoscopy. I do not even remember the name of the doctor because after the visit where I got my results, I stopped seeing him because I did not feel he was taking me seriously.

Any thoughts, comments, or opinions would be greatly appreciated.

As a side note. I have been getting sick to my stomach lately about an hour to an hour and a half after eating products containing gluten. I found Chex cereal was gluten free when I went to the store. I am so tired of getting sick everytime I eat that I bought some rice chex and had some for dinner. I do not eat my cereal with milk because I seem to be lactose intolerent (never actually tested for it). Dinner was almost three hours ago and I have not been sick to my stomach since.

Thanks for all of your help and answers.

Even if your tests were negative then, it does not mean that they would be negative now. You may not have had enough damage to show up on the endoscopy or the damage could be patchy and they may not have taken the samples from the right place OR they may have only taken one sample. Legally you are entitled to a copy of all your medical records and test results. I suggest you contact the doctors office that did the endoscopy and get the results to see for yourself. Also get any blood tests they did prior to the endoscopy to see if you had positive bloodwork and they just didn't tell you. I have even read here of people with positive results being told they were negative! But even if it is negative it's a good start to take to a new doctor and request a retest.

Jo2009 Newbie
Jo2009
Posted

Just remembered that I went to a GI doctor when I was really sick as a teenager. He did an upper endoscopy and took biopsies (sp?) of my small intestine. He told me that they came back normal. I cannot remember if he did any blood testing, but I would think he would before performing an endoscopy. Not sure if this helps or hurts my theory at this point.

It would make the most sense to me if he had blood work and it came back elevated then did an endoscopy. I do not even remember the name of the doctor because after the visit where I got my results, I stopped seeing him because I did not feel he was taking me seriously.

Any thoughts, comments, or opinions would be greatly appreciated.

As a side note. I have been getting sick to my stomach lately about an hour to an hour and a half after eating products containing gluten. I found Chex cereal was gluten free when I went to the store. I am so tired of getting sick everytime I eat that I bought some rice chex and had some for dinner. I do not eat my cereal with milk because I seem to be lactose intolerent (never actually tested for it). Dinner was almost three hours ago and I have not been sick to my stomach since.

Thanks for all of your help and answers.

At last I have found a whole lot of people who will understand what is going on with me! I was like you with the gluten but found milk was making me feel sick. I tried a lactose free milk but still felt sick - couldn't understand that until my Naturopath told me that it was probably not the lactose in the milk but casein (the milk protein which is similar to gluten). I now use A2 milk (has a different protein) and have no trouble with that but it has meant that I've had to give up all other forms of dairy - no ice cream, cheese, milk chocolate! :(

Naturopath suggested I use soy milk and that was how I discovered my soy intolerance - probably one of my worst intolerances.

This whole thing really sucks! Does anyone ever get better or able to tolerate any thing again?

Grateful for any responses or advice about managing day to day eating.

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