New Here And Overwhelmed

[sneezydiva]

Hi,

I just discovered this forum yesterday. I am very concerned I may be celiac. I have been struggling with extreme fatigue for over 8 years. Here is my history, I'll try to be brief.

As a kid, I always had allergies, and was always very skinny,to the point doctors were concerned. I was a very picky eater as a kid. One pediatrician told me mom to let me eat all the hot dogs and peanut butter I wanted (2 thingsI loved) because I needed to gain weight. Allergies were truly seasonal back then, but very severe in fall. In college, my allergies worsened. I slept A LOT, and do so until this day. My nickname in college was sleeping beauty. But I could still function as long as I got my 10 hours. After I was married, my fatigue worsened. Since I had very visibile allergy symptoms, I was referred to an allergist, was tested, and recieved shots. After a while on the shots, my fatigue went back to it's more normal level, for awhile. But then we moved, and my fatigue worsened again. I was retested, put on shots, and this time did not improve. So they tested me for food allergies. I was shocked when they found some. Most were borderline positive except for egg and tomato, which were very high. This struck me, as these were two foods I refused to eat as a child, even ketchup and pizza, and still avoided as an adult. Of course, egg is hidden in many foods, and elminating those foods did help me somewhat. Wheat and barley were borderline. I was told this was a "false positive" due to my grass allergies, and not to worry about them.

Anyway my fatigue worsened, I wake up each morning with my whole body aching. I have a very kind primary care doctor who ran all the normal tests, and of course they were all normal. Despite that, he referred me to a rheumatologist. The rheumotolgist treated me horribly insinuating I had depression and anxiety. Despite being ready to cry, I was able to deflect his dimissals of me by flaunting my psyche degree and assuring him that if I were depressed or anxious I would know it and seek the proper help. So he ran the proper tests for lupus and rheumatoid arthritis. All were negative,except my CRP was very high. I didn't want to go back to that jerk for the results, so I went to my primary care doctor for them. He said the high CRP is likely related to inflammation from my allergies.

Three months ago, I began having digestive problems. Except for occasional constipation, I never had digestive problems--EVER. I suddenly had diarhea and constipation, horrible bloating--like a volleyball was in my stomach, and very sharp stomach pains. I was diagnosed with gastritis, and test for h. Pylori. which was neagative. and put on Nexium. When it didn't resolve, I was sent the gastoenterolgist. In the referal,my doctor specifically asked for an endoscopy. The gastro took one look at my 32 year young and healthy looking self, and seemed annoyed that I was there. He changed his tune somewhat when I mentioned my doctor's name when describing my history, as he is pretty well respected. But he suggested it was gallbladder and what I really needed was an ultrasound. But then he examined me, and changed his mind again when he felt how tender my stoamch was, and scheduled the endoscopy. I just had it two days ago. I don't remember it, but my husband says the doctor just quickly told him, no ulcers, some inflammation, and they took a couple biopsies,and walked away to do the next one. My follow-up is already scheduled, except it is with the P.A. which I find a little odd, but may be a good thing.

I read an article about Celiac disease in a woman's health magazine a couple years ago, and it really rang a bell, except then I had no digestive complaints, so I didn't persue it. Now just the tiny bit of research I've done, I have learned you can be celiac and not have any intestinal pain. I am soo convinced I may have this. Everything just seem to add up. Little things, like beer always makes me sick, but wine doesn't. Whole wheat bread gives me brain fog. How wonderful I felt on the Atkins diet, but I was talked out of staying on it by my R.N. mom because of potential kidney damage. My grandmother with severe osteoporosis and digstive complaints all her life no one could figure out and she was told was all in her head.

I couldn't get any info from the nurse about what they are testing for in the biopsy. I really hope Celiac is on the list. The government is paying for it, so hopefully they checked every box possible LOL. I showed some of the Celiac info to my DH and he finds it compelling too. He is going with me to my appointment, and demand the blood tests if they didn't biopsy for it. Does anyone have any other advice on what to do at this appointment?

Sorry to be so long winded. It is just a relief to find some sympathetic ears.

[happygirl]

Sneezydiva,

Wanted to offer you a welcome to the board! This is a great place, full of information. I hope that you will find answers and your health improves...you have had a LONG journey!

Just something to keep in mind: even if the bloodwork/biopsy is negative, it still might be worth it to try the gluten free diet, and see if your symptoms improve. Some true Celiacs don't test positive, and some people have non-Celiac gluten intolerance, which has a lot of the same symptoms. You have learned a lot already: Celiac can present with a wide, wide, wide array of symptoms, ranging from none/some/debilitating. Just about everyone on here has a slightly different presentation of symptoms.

If you ask for the bloodwork to be run, print out this list and bring it with you, to ensure that they run the FULL and RIGHT tests. It is from Dr. Peter Green's Celiac Disease Center at Columbia University. He is a leading Celiac expert. Keep in mind NOT to go gluten free until testing is complete. (think of it like diabetes testing....when you are eating bad, your blood sugar is all over the place...your scores "say" you are diabetic. When you get it under control, your scores are normal...it doesn't mean you aren't a diabetic anymore, it just means it is well controlled at that point. Same with Celiac. The tests are checking for an antibody response to gluten...so if you take out gluten, your body stops responding to the evil substance, so your tests return to normal. Again, doesn't mean you don't have Celiac, it means you have healed and stopped reacting. The goal for a Celiac is to have "normal" bloodwork again).

from: Open Original Shared Link (btw-the rest of the site is great as well)

Serologic panel

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck to you. Regardless of if it is a Celiac/gluten problem, I hope that you find answers!

Let us know what else we can do to help.

[gfgypsyqueen]

Wow. Sorry it took you so long to find out about Celiacs. I think it averages 10 yrs for a diagnosis.

When you go back for your follow up appointment you want to leave with a copy of the tests (blood work, biopsies, etc.) and the results. Lots of people on this site can help you interpret the results. Have them explain exactly what they tested/biopsied and why. How many biopsies they took? What lab processed the results? Promethius is the best choice. Bring paper and pen. Ask if they did a gene test for Celiacs. That would at least tell you if you have the gene, but don't have Celiacs now. What other things were they looking for durignthe endoscopy? Did the endoscopy rule out any conditions/diseases?

If you have Celiacs, you may want to ask for a letter stating that this gluten-free diet is medically necessary. That can be helpful when traveling, espcially abroad. (Celiacs tend to pack food for trips and airport security is not always very happy about it.)

BTW, blood work has a high false negative rate. I am really hoping they biopsied for Celiacs. Hate to have to do it again.

Also, do not expect them dr or employees to be abel to tell you very much about the Celiac diet. I finally understand that I loved my gastro but he was useless on the diet, which is very frustrating. The Gastros job is to be able to see the signs of Celiacs and make the diagnosis, but you really don't understand this diet unless you have to live it.

Another thought is go see an herbalist. They can recomend vitamins and herbs that will help you start to feel like a normal person again.

Best of luck. Post the results and ask questions here. The people on this site have a lot of knowledge about celiacs.

[lob6796]

I could have written your post. As a child I was constantly underweight. Dubbed a picky eater, my doctor said the same to my mom - if there's something she WILL eat, then let her eat all she wants of it. I always slept alot, but around college the true fatigue kicked in big time along with joint pain. Fast forward 5 years later and I go to my doctor for chronic muscle and joint pain, chronic severe fatigue, memory problems, and an inability to focus.. and a "oh yeah, I think I could have IBS too, the last year or two my stomach has been pretty crappy".

I was diagnosed with fibromyalgia after being tested for everything under the sun from Lupus to Rheumatoid Arthritis. They questioned depression as a cause before settling on the fibromyalgia. As a last ditch effort, my doctor sent me for food allergy testing and "threw in" the test for Celiac for "kicks". Wouldn't you know the test came back positive. I'm going for a biopsy to confirm, but looking back on my life it just makes so much sense.

I hope you get some answers soon. Good luck to you.

[sneezydiva]

Thank you so much, both of you. happygirl, I will definitely bring this list with me. Thank you for providing it. gfgypsyqueen, I wholeheartedly agree with you, I'm praying they biopsied specifically for celiac and not just for h. pylori and other bacteria.

From reading posts here, it sounds like at least 5 samples need to be taken. My husband said the doctor's exact words were "We took a few biopsies." So it sounds promising. It would be such a shame to have to do the endoscopy again. Despite my long, winding road with doctors and fatigue, I at least take some comfort in the fact that the gastro knows something is really wrong with my stomach/intestines. I don't think it will be difficult to get either him or my regular doctor to order the blood tests if they're needed. Hopefully, though they won't be neccessary because they've biopsied for it.

I think I will try the diet after all testing is complete regardless of the outcome. I really hope I can get a firm diagnosis though. I'm tired of being labeled a hypochondriac by family. Even my husband who tries so hard to be supportive gets frustrated with me at times.

Wow. Sorry it took you so long to find out about Celiacs. I think it averages 10 yrs for a diagnosis.

When you go back for your follow up appointment you want to leave with a copy of the tests (blood work, biopsies, etc.) and the results. Lots of people on this site can help you interpret the results. Have them explain exactly what they tested/biopsied and why. How many biopsies they took? What lab processed the results? Promethius is the best choice. Bring paper and pen. Ask if they did a gene test for Celiacs. That would at least tell you if you have the gene, but don't have Celiacs now. What other things were they looking for durignthe endoscopy? Did the endoscopy rule out any conditions/diseases?

If you have Celiacs, you may want to ask for a letter stating that this gluten-free diet is medically necessary. That can be helpful when traveling, espcially abroad. (Celiacs tend to pack food for trips and airport security is not always very happy about it.)

BTW, blood work has a high false negative rate. I am really hoping they biopsied for Celiacs. Hate to have to do it again.

Also, do not expect them dr or employees to be abel to tell you very much about the Celiac diet. I finally understand that I loved my gastro but he was useless on the diet, which is very frustrating. The Gastros job is to be able to see the signs of Celiacs and make the diagnosis, but you really don't understand this diet unless you have to live it.

Another thought is go see an herbalist. They can recomend vitamins and herbs that will help you start to feel like a normal person again.

Best of luck. Post the results and ask questions here. The people on this site have a lot of knowledge about celiacs.

[sneezydiva]

I could have written your post. As a child I was constantly underweight. Dubbed a picky eater, my doctor said the same to my mom - if there's something she WILL eat, then let her eat all she wants of it. I always slept alot, but around college the true fatigue kicked in big time along with joint pain. Fast forward 5 years later and I go to my doctor for chronic muscle and joint pain, chronic severe fatigue, memory problems, and an inability to focus.. and a "oh yeah, I think I could have IBS too, the last year or two my stomach has been pretty crappy".

I was diagnosed with fibromyalgia after being tested for everything under the sun from Lupus to Rheumatoid Arthritis. They questioned depression as a cause before settling on the fibromyalgia. As a last ditch effort, my doctor sent me for food allergy testing and "threw in" the test for Celiac for "kicks". Wouldn't you know the test came back positive. I'm going for a biopsy to confirm, but looking back on my life it just makes so much sense.

I hope you get some answers soon. Good luck to you.

Thank you! I feel the exact same way you do. Though I don't have any tests results, everything seems to add up. Other things like rheumatoid arthritis were compelling, and I wanted to be tested for them, but I never felt they were a perfect fit of my symptoms even before the tests were negative. But like you, looking back on my whole life, celiac disease seems to fit like a glove.