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I know I'm not answering all your questions - I don't have time just right now - but thought I'd ask if you've seen any of the research looking at the possible environmental triggers? There's some evidence that a yeast infection of some variety triggers the initial immune response to gluten. There's also some evidence that there may be a bacterial link (more likely a lack of certain bacteria than an infection, in this case). And, of course, both of these do tie in with the connection between repeated doses of antibiotics during an illness that often preceeds celiac symptoms.

The inflammation component of many autoimmune diseases, not just celiac, can often have systemic effects, and when you combine that with a leaky gut, where incompletely digested matter can escape the digestive tract and enter the blood stream, the risk of non-gi symptoms likely increases. I haven't specifically seen studies done about the permiability of the gut to opioids (which can be one of the bi-products of the incomplete attempts at breaking down gluten in our intestines), but we already know they can pass the blood-brain barrier.

Anyway, my only point was that pubmed may have some interesting research for you to peruse.

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red345: I'd like to participate but must find more time.

Tiffany: please expand on the gut...opoids connection.

Thanks, Deb

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I'll answer just a few of your questions now, maybe more later as I find this VERY interesting. I was first thought to have systemic lupus as I had several of the main symptoms, including the blood marker. Doc had a wait and see attitude (thankfully) and about a year later the stomach trouble had worsened terribly and I was finally dx'd with celiac disease. Once I went gluten-free nearly all the symptoms of lupus went away, too. I took tetracycline from age 16 to 23 for acne (terrible mistake, acne wasn't even that bad, but a dermatologist prescribed it). Once I became pregnant with my first child I stopped the tetracycline and began having lots of digestive problems. (I lost weight instead of gaining for the first 3 or 4 months.) I was very sick with all three of my pregnancies, very anemic and never gained much weight, although all three children were born very healthy, thank God! After my third and final pregnancy I seemed to never recover, staying sick and anemic and then the lupus symptoms began, then the celiac disease. I've oftened wondered if the tetracycline or the pregnancy was my "trigger" for celiac disease. I may never know for sure, but I think this type of research is SO important and I hope you get many more responses. Good luck! Vicki

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Adding a brief reply.......not having a firm diagnosis, my body just feels so much better when I eat gluten-free, going to be taking the Enterolab test this week. These are the similarities with your survey:

1. I have fibromyalgia

2. I have a son with ADD and a granddaughter with celiac disease

3. I am almost sure I have a sensitivity to diary

As I am 59, it is taking awhile to get straightened around here. I find the simpler I eat, the better off I am. As I have had knowledge of this with my granddaughter for five years now (she is six, diagnosed when she was one and VERY sick), I have been surprised at how easy it has been for me to stick with this eating plan, and I think it is because my body wants to eat this way. This is all very interesting as I firmly believe there can be a connection between fibromyalgia and a gluten intolerance and my doctor just rolled his eyes. I will be watching this survey with great interest. Thank you for getting it going, Barbara

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I'll answer a few... :)

3. I had a flu shot about 5 months before diagnosis

4. I was going through a stressful time before my worst symptoms appeared, nothing major, but stressful.

5. see #14

10. I have a family doctor and a GI specialist, both are in agreement with my diagnosis.

12. I react to dairy products (Not sure if I'm intolerant to lactose or casein) but these symptoms started at the same time as my celiac symptoms.

14. I did so many of those stool tests.... :angry: and I was tested for parasites (I think) and I may also have been tested for Candida or H. Pylori as well. My GI doc just wanted to rule things out.

17. My family is going to get tested

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Can I ask what you plan to do with information? I have a lot to offer about myself and family that you might find interesting, but would like to know how it will be used.

Apologies if it is outlined in your long post. I don't think it's mentioned, but I might have missed it.

H.

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Red 345,

I have printed out your info and will read it again. As a nurse I have

problems with your advising everyone to take Probiotics,Natural VitaminE,

and other supplements. Vitamin E can cause a rise in blood pressure in

some people. I think this is very dangerous to give out this "advice".

We have all been ill for long periods of time and I prefer to take the advice

of an M.D. although I have had disagreements with a lot of them, I still

respect their education and experience. What medical school did you graduate from?

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WOW-E-WOW---That was some long and involved exchange, but I feel glad that it took place. Having fibromyalgia and feeling that there really can be some connection between it and a gluten intolerance, reading things like this validates that notion. I also feel strongly about the dairy intolerance coming along when the gluten one does. Maybe it has something to do with it all appearing when you are somewhat older. It is interesting that it has all showed up within a year's time frame too!!! Just diagnosed with the fibro last December. If it weren't for this message board, I wouldn't have been able to put it all together, thanks to all who have contributed. Barbara

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HEY KEVIN---Just was driving along in my car and was thinking about your original questions. I am on lots of medications and am wondering if all of this stuff is starting to compromise my health. What do you think? Here goes......

Verapamil (to keep the blood pressure low/migraines away), Topomax (to keep the migraines away), Synthroid (thyroid out of whack), Doxepin (depression/and to help with sleep disturbances due to fibromyalgia), Mobic (anti-inflammitory for the pain of fibro). I tried to stop taking the Mobic and my arms, where the fibro has settled, were just killing me.

For a while now, I have been thinking that I wanted to cut back on some of my meds, but I just don't know where to start. I also take supplements:

fish oil, glucosamine, calcium, magnesium with malic acid (for the fibro), vitamin

D.

So what do you think?

Barbara

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Kevin: At first I did not think I would reply to your questionnaire, but on reading all this topic, I think I have something worth adding even though I have not been diagnosed with celiac disease. I have had digestive problems since early childhood. I am currently using the SCD diet put out by Elaine Gottschalk in "Breaking the Vicious Cycle" . It's worth a try. Have been on this about 7 weeks now with one major backsliding in mid-August, but have been completely on since then. Have noticed an improvement in energy. Otherwise symptoms are up and down. I am 76 years old. Symptoms have varied over the years. Constipation a major problem in childhood. Teen years, extremely painful sessions of formed stool all day long at intervals. Possibly related to periods.Age 18 given penicillin. Painful sessions stopped, but constipation continued. Treated with mineral oil preparation. 6 healthy children, one miscarriage as a result of being given a cortisone shot for a painful shoulder. Surgeries: tonsillectomy, many sore throats, broken eardrums. Appendectomy because of an attack. Hysterectomy, abnormal cells, cervix. Not cancer. Gallbladder removal last Feb. No change in symptoms: burning pain across right ab. originates in a spot right under my right rib cage in center upper abdomen. Goes to right shoulder blade. Burning goes up and down esophagus into throat and down to bladder, rectum area. Left side comfortable. Other symptoms now. Yesterday, not too bad. Today symptoms very strong. Include: prickling hands, arms, ankles feet. Sometimes I describe it as tingling. Very sore right foot, X-ray shows calcium deposits. Also a 1998 X-ray of bowel showed Mid abdominal vascular calcification suggesting atherosclerotic change of superior mesenteric artery. Sometimes I have an "attack" when an ache goes up my arms, more in the left one than in the right. Goes cross chest. Have had heart exams , normal results. My skull feels tight on the left side. There is a numb, or prickling sensation in face, jaw and down neck. My joints ache. Obviously , this is not incapacitating, just very uncomfortable. Some of this is present most days, but not to this extent. I am not constipated today, have had four sessions of soft stool, but took mineraloil and Milk of Magnesia last night and for several previous nights. I have lost about 30 lbs. in the past year, with ups and downs. 2. Don't remember all the medications I have taken . I did use nearly all the popular antacids before gall bladder removal. Have stopped taking those since they never helped and upper endoscope showed only slight inflammation. Dr. said I could take them or not as I wish. Called it Nerd instead of Gerd. I take a multivitamin that has pharmaceutical glaze, vit. e, cod-liver-oil liquid, (was given that as a young child). chondroitin and glucosamine tab., procreatin, acidophilus, calcium 360mg., chelated magnesium tab. , folic acid, off and on, chromium with B6, Cn't remember if that's all in the a.m,. Was having trouble with very hard stools that required pressure on sore upper ab to pass. Have recently taken Milk of Magnesia, 1 tblsp. and Mineral Oil 1 tblsp. at bedtime. That seems to produce softer stools, but too many. Not sure what is causing what. Sometimes I use Mineral oil enemas or a warm water enema in a cleaned enema bottle. I am assuming that if I indeed have celiac, (blood tests from Mayos came back negative have not had biopsy), I have had it since childhood. Did not take prescription meds or many OtC things back then. I used to use Tylenol, but have stopped taking that in the past 3 months or so.3. Have had the regular childhood vaccinations given back then. Now I have a flu shot every year and have had a tetanus shot within last 5 years. 4. Start of menses when painful stool sessions began. These current burning sensations were going on at least several years before my gallbladder surgery. Only they are worse now. I think. I keep a journal.

5. Have been tested and treated for H.Pylori, not sure about Candida. 6. See No. four. 7. No. 8. I don't know. I wonder. Liver is not enlarged. 9. I have had ulcers but cannot relate that with these symptoms. 10. Not applicable. 11. I do live in Minnesota, I think that these upper burning things have originated since we moved here. We lived in South Dakota, Illinois, Missouri, Papua New Guinea, and North Dakota before moving to Minnesota. 12. Yes, I am lactose intolerant.

Today's worse symptoms may be do to experimenting with taking lactase tab. with yogurt the past week or so. There are other possible variables that may figure in.

13. No., 14. Yes . Was treated for them after leaving New Guinea. Also had parasites after a trip to Mexico in the 70's/ Was given medication. Can't remember the name, but a standard treatment. 15. Yes. I haven't had the test. 16. Not now. Was taken off a year ago after having been on for 15-20 years. 17. No, I live alone. 18. No. 19. I had periodontal surgery in the late 60's. Have had treatment on a regular basis since then , although there has been no return of the disease.

Treatment is basically periodontal cleansing. 20. My youngest sister might have been diagnosed with ADD or even autism today. She still exhibits strong symptoms of the latter. I have a daughter who has a rare syndrome that causes swelling of parts of her body and can be life-threatening. I can't think of the name of it . I don't know if any of this is useful to you since I haven't been diagnosed. I seem to have gone into some detail. I do not expect you to diagnose my ailments or give me any medical advice. Strack 2004

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Kevin, I didn't really tie up my answers with your aims for your questionnaire yesterday. A possible connection is that my body aches and abdominal burning seem to be better on the same day and worse at the same time. Also, the name of my oldest daughter's problem is angio-edema, inherited. There are relatively few documented cases of this ailment. She was diagnosed at Mayos. Strack2004

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Hey, Red, I'm with you.....I want you to know that beta blockers can do very weird stuff to you. I was on Inderal to keep my blood pressure down due to my migraines. Then I got asthma. My doctor had me on some very serious asthma medications. I ended up at a pulmonary specialist who said that I didn't have asthma........it was the Inderal. He sent me back to the doctor with the instructions to pull me off the Inderal (they did and too fast and I was one sick puppy!!!) and the pulminary specialist pulled me off all the asthma medication. I DO NOT have asthma....it was the Inderal that was causing it. It was the SAME doctor that prescribed the Inderal and the asthma medication...a family physician. Just thought you would like this information on what beta blockers can do to you. Barbara

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KEVIN - I have to thank you for the info on the beta blockers. My doctor just recently gave me samples of them to try for lowering my blood pressure. Thankfully years ago I had heard negative comments about them so I decided to hold off trying them. Now after reading your posts I know I will definitely NOT take them, especially since I have full-blown celiac disease and Lupus looming large behind the scene (no obvious symptoms now, just a HUGE jump in my ANA level, which my doctor knows about but still gave me the beta blockers). So, thanks again for the info. And at your young age, I don't see why you aren't pursuing a medical career. Do it while you're young!

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1)Medical conditions that may or may not exist along with the Celiac Disease. If so, what came to be first-Celiac, or the other disease. Time period between?

2)Any and all prescription and over the counter medications/vitamin or herbal supplements you were taking within three years of experiencing your first celiac related symptoms. Please specify whether or not you have ever taken any enteric coated medication, too (A few types of aspirin, Tylenol, ibuprofen are coated-they are designed to pass through your stomach so they may digest in the UI)

3)Any immunizations taken within 5 years of your first symptoms-please specify if they were not routine (IE-If it was your first flu shot, or the first one you had had in ten years, etc).

4)Any major life stresses correlating with the onset of symptoms-

5)Have you ever been given a lab test for Candida or H. Pylori

6)If applicable-Did your onset correlate with Menopause or a pregnancy; do your symptoms change in relation to your period

7)Have you been diagnosed with Chronic Fatigue or Fibromyalgia.

8)Is your liver function abnormal? If so, did this occur before or after being diagnosed or 1st experiencing symptoms

9)Have you ever had peptic ulcers? If so, did this occur before or after being diagnosed with Celiac Disease, or 1st experiencing Celiac related symptoms

10)Have you ever sought a 2nd opinion? If so, were the findings different in any way

11)Do you live in a region that is known for its genetically modified grain/wheat production? If so, were you diagnosed in the early or mid 90's? (Keep in mind the fascinating thing about what you have is that it is a sensitivity to wheat/gluten, not necessarily a RAST allergy)

12)Do you feel, or do you know, that you may experience sensitivities to dairy?

13)Do you consume asparateme?

14)Have you ever had a stool analysis performed that measured for parasites?

15)Do you have mercury fillings, or have reason to believe that you have ever been exposed to high levels of mercury, lead, ammonia, or cobalt. Have you ever had a 24 urine test done for heavy metals?

16)Are you on HRT?

17)Do you live with a family member that has also been diagnosed with Celiac Disease?

18)Have you ever had any testing done on your Thymus gland?

19)Do you have gingivitis?

20)Is there any history of ADD in your immediate family?

Ok, here is my response, I hope it helps!

1. Food and environmental allergies and prediabetes. Allergies came first, as a child; Celiac was second, with adult onset; prediabetes was third, just occurred.

2. I do not remember when I had my first bout with celiac, most of the symptoms have just always been there. I did (and still do) take enteric coated medications: Ecotrin as a teen and now odorless garlic.

3. None-many vaccines are cultured in eggs, which I am very allergic to.

4. No.

5. No.

6. No.

7. No.

8. No.

9. No.

10. Yes; the findings were the same.

11. Yes, I live in farm territory. No.

12. I do not have problems with dairy.

13. No.

14. Yes, it was negative.

15. No mercury fillings, no exposure to heavy metals.

16. No HRT for me!

17. No.

18. Yes, it was normal.

19. No.

20. No.

If you have any questions for me, email me!

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your last paragraph there reminded me of a time I argued - strenously - with my doctor against taking a particular antibiotic. well, I had taken it, and it made me sick. he didn't believe me, but fortunately the nurses had seen other patients coming back with this complaint as well, and essentially overruled him. given the vomitting it was causing (and I normally do NOT respond to antibiotics that way), that is probably one I would have refused to take (you can only go so long without keeping food down ever, and 10 days probably would have had me in a hopsital). that said, it would have been necessary for me to talk to my other doctor for a viable alternative - because just not taking meds for fear of potential side effects is, as you said, a dangerous thing.

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Hello Kevin,

before i start to answer your questions i'd like to say, i agree with enigma. You're still young and can learn medicine. I learnt medicine myself for several years, but failed the test, because due to the celiac my brain was like a sieve. I didn't find the subject difficult at all, i just can't remember it. I'm 28 now and several month ago it came out that i have celiac disease. A lot of my symptoms are better or gone now and i decided to go back to school and try the medicine thing again in a few years, which is even harder for me now, since english isn't my mother language (i'm from germany) and i'm living in the states now since last year november 5th.

But now to your questions:

1) Well, because of the problems i had all my life i think i had celiac all my life. But it was really triggered in the year 1998 after a tooth surgery and all the "real" problems started. When i was 17 (that was 1993, 5 years earlier) a doctor found out that i have some thyroid problems, but i can't remember anymore, if it was a hyperfunction or a subfunction. But it disappeared again a few month later after taking medication.

2) I've taken so many medications against so different things, i can't really remember all of the names to be truthfull (would be german medication anyway) But i do remember that i had an allergic reaction against Aspirin a couple of years ago. Before i got "really" sick in 1998 i actually never really took pills. I only remember taking antibiotics as a young adult. I think it was against a severe flue. And the other thing was against a gastro-intestinal tract infection and a fungus or something. I don't know how to say that in english. And i take Centrum Multivitamin since August this year.

3) Well, as a kid/baby i had all the (in germany) required vaccinations. Which is diphteria twice 1976 and one 1977 and then one reviver 1999, tetanus twice 1976 and one 1977. One tetanus in 1980 and one in 1983. And then another one 1989 and again another one 1998. And i got shots for poliomyelitis (all three types) 1976, 1977, 1978, 1986, 1998 and 1999. Then i got shots against rubella (german measles) 1987 and then Hepatitis B twice 1997 and once 1998. And when i came over here i had to get an MMR shot in february for my papers for the states. Whatever MMR is, you guys must now. All of them were just routine. And i wanted to get the hepatitis B because of my job as a police officer.

4) Well, in january/february 1998 i started with my own martial arts school plus i had the police duty shifts and slept only 4 hours each night until July 1999 when i stopped the police work, because i thought that this causes my severe headaches. And in 1998 i had this tooth surgery when the dentist put a filling in one of my teeth. When the anesthetization died down my pain started immediately and got even worth until my diagnosis this year in July.

5) I'm not sure, but i think yes.

6) No.

7) No.

8) No.

9) No.

10) No.

11) No.

12) Since i'm on the glutenfree diet a lot of my problems are gone or have improved. But i still have pain sometimes and so the idea popped into my head, that there might be something else. Until now i only tried to drink a glass of milk every day, but that doesn't seem to cause the problems. I will still try fructose and if that doesn't bring a result i'll see another dentist over here.

13) Never heard of that so i never took it. I don't know the german name for it.

14) Yes.

15) I strongly think, that the tooth surgery with this filling caused my problems and triggered the celiac. I still don't know, what kind of filling he put into my tooth. Those days my dentist just said, it's a new "less harming" substance which has tooth color and so you can't see it.

16) No.

17) I strongly believe, that my mother has it and that my grandma had it (according to their health problems). They've never been diagnosed though.

18) No.

19) I had it really bad until 1998 although i cleaned my teeth hysterically (i'm afraid of dentists). After that traumatic tooth surgery in 1998 i've never been to a dentist anymore, so i don't know.

20) No.

Well, I hope i could help you with this although i'm not from this continent...lol. If you have any other questions, please feel free to send me a mail.

Lots of greetings, Stef

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I keep coming back to this and reading it over and over. Perhaps I should mention something else about myself that my sister reminded me of: I had rheumatic fever when I was 12. That is when I started exhibiting symptoms of arthritis, and even tested positive for Rheumatoid arthritis. Now, my Rheumatoid tests are negative, but my Osteoarthritis tests are positive. Hence I am on Vioxx for inflammation control. I have allergies to foods and pollens, my immune system just seems to over-react to the littlest thing! When I was pregnant with my second child, my ob-gyn did an immunity test. He said how fortunate that I had had all of the major diseases early on in life, and that the polio did not cause any permanent damage. I have not had any or those diseases, not even chicken pox. I did have all of the childhood vaccines, and was exposed to measles, mumps, and chicken pox as a child, but I never had the diseases themselves. He said my immunity levels were those of someone that had the diseases themselves, they were way to high to just be from exposure, including the polio. I don't know what that may have to do with Celiac, but if you are looking for something about the auto-immune system, well, there is mine. It could just be that my immune system goes berserk, and is just looking for a fight, so it fights with my body! If it is in hyperdrive, then maybe that would explain why I have so many allergic problems. They range from anaphlaxia (rice) to migraines (eggs, strawberries) to flu-like symptoms (grasses). I hope this thread stays open for a while, it is taking the shape of some good, deep research.

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Hey Kevin,

it's me again, i can calm you down. Since i've had problems my entire life and the severe celiac symptoms already were triggered in 1998, i don't think, that my being over here caused it. Maybe it didn't even make it better, because of all that pizza...lol. But it sure didn't cause it. I already had a lot of bad problems before coming over. In fact, if i wouldn't have come over here, i probably still wouldn't know, what i have.

Let me tell you real quick how i found out i have celiac. I remember it as if it was yesterday. I came over here last year in november (the 5th actually). About 2 weeks later my parents in law had the idea we could eat chicken wings in a restaurant, because that would give me experience about new food over here. Well, i enjoyed the chickenwings, they tasted really great. But these chicken wings really gave me a pain i thought i pass out every moment. And i already had ordered mild for myself. I had migraines (sp?) and pain in my guts it wasn't funny anymore. And since my -those days- soon to be husband and i drove home immediately after that meal (we live 2 hours from his parents) he suggested one more time (like always): "Oh heck, you get sick so fast of traveling". I just mentioned to him not to be silly. I never heard about getting migraines from traveling. But maybe the pain in the guts. Well, however. The other day i went to the restroom and as soon as the damn chickenwings left my body (the natural way...lol) from one second to the other the pain stopped. Like somebody snipped with a finger. So for the first time in my life i thought, my problems have to have something to do with food. I mean, i didn't have a clue before, where my problems might come from. Well, i first suggested, i can't eat hot stuff. But then again i thought that can't be. I already had the symptoms in germany and i hardly ever ate hot stuff at home. So the first time i had the suspicion that it's from food in general. I told my doctor where i went to regularly at the beginning of this year. But he suggested one thing after the other and told me, he doesn't think, it's a food allergy. So what should i do. I made a food diary for myself and that's how i found out, that it must be that gluten. And because my doctor was so stubborn and first didn't test me for it i thought, well, just start this glutenfree diet and it worked fine for me. Well, i mentioned this fact to him and then suddenly (after my success) he wanted to test me. I reminded him, that the tests probably would be falsified, but he said, he would be sure it's not necessary to eat gluten before. He obviously doesn't have a clue... So i started to go back to glutenfood for a while (it was terrible). Of course the blood tests were negativ. I never made a biopsy. I feel well now, why should i. It's not that complicated than i first thought. You can live pretty good with that disease, if you are a little flexible with your time management and improve your cooking skills. And since i'm a "nightbird" i go shopping with list in the night, so nobody stares at me, while i read labels. And all the giants stuff members already know me and my problem and help me out, if i'm looking for something special. It's quite funny actually. Of course we don't have kids yet and still i'm not allowed to work (green card). So that gives me enough time to improve language and cooking skills enough every day. So i can improve without hectic for the day when our family grows and i start to work and get a little routine. But i'm changing subjects here.

In fact i actually only wanted to say thanks for your suggestions that it could be the Centrum vitamins. I think i read somewhere else they are glutenfree. But obviously they are not. I will give the Nature's Made vitamins a try and if my condition improves, we solved the problem. If not we might try something else. Sorry for my stupid question (maybe i already know it but don't see the forest of all the trees). What is RDA?

The next thing i found very important is, that i'm not only thinking, my mother has celiac and my grand-ma had it. But i know of a cousin that has MS. I thought that might help. This cousin, she is the daughter of one of my mother's sisters. So these problems probably runs in my mother's (or her mother's) side of the family.

I hope i could help you.

Nice greetings, Stef

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Ah, shoot, there's something else i actually wanted to say. Well, my cousin (the one with the MS). Well, i asked my mother, if they ever found out, where it came from. And my mother answered, they aren't sure about what caused it. But those times my cousin grew up they still numbed you with laughing gas at the dentist. And she loved it so much, that she kind of tried to get a lot of dentist appointments to inhale that stuff on purpose. Until in germany (or europe, i don't know) doctors suggested, that this laughing gas might play a major role in getting MS.

And i'm sure you heard about that english playwright who had MS and he tried the glutenfree diet and was almost healed when he died in the end. And they say MS is actually not healable.

Well, that was another thing i thought you might find interesting.

Greetings, Stef

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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