Does Anyone Have a Gluten Sensitivity or Celiac?

My daughter was just diagnosed with Celiac, the doctor took a biopsy of her intestine.

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M.,

I'm sorry that you're experiencing all of these symptoms. Autoimmune disorders can be very frustrating. When I was a medical student, I was worked up for an autoimmune disease...lots of blood work etc. I met minor criteria for lupus but no major criteria. I was bounced back and forth between different MDs and never got an answer. I was so frustrated, and I began looking up all sorts of things in my medical texts to try to make my symptoms fit SOME kind of syndrome, but really wasn't able to.

That being said, I can tell you that your symptoms are not classic for gluten enteropathy nor celiac sprue. That's probably why your GI doc wasn't very helpful. A rheumatologist will be the most helpful if there is in fact a common linkage for your symptoms. Having a positive ANA makes it more suspicious that you might have a true autoimmune illness, but an ANA is a very nonspecific test and is not diagnostic by itself.

Go see what your rheumatologist has to say. If you are still worried about gluten, try avoiding it for a while and see if you improve.

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I have a gluten sensitivity, and my sister has very bad celiac. Her blood tests always came back negative, as well as other tests. It wasn't until they did a intestine biopsy, that they were able to get a diagnosis.

Were you currently eating a gluten diet, when you took the test? If you were already eating gluten free for a little while, then that can alter the test.

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Have your tried to go glueten free for at least 2 weeks? Maybe your symptoms will improve that way. You might not have a conclusive diagnosis but you still might feel better.

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Actually, the best test for gluten sensitivity or celiac disease is a saliva test. You're right, blood test for this can be a false negative. I saw it with my own mother. The reason is, that the protein that they are looking for (gliadin) is strongly protein bound in the blood which makes the test less sensitive. In saliva, it's free and easily detectable even to the point where it can detect sensitivity, not just raging celiac.
Several issues could be the case here. The rheumatologist will look at is the ANA test and assume that you have an autoimmune condition. The first one she/he will consider is Rheumatoid arthritis. The ANA test is the gold standard to determine this diagnosis. Is the joint pain and swelling on both sides of your body? That would also point more to RA. I'm sure several more tests will be done to determine that diagnosis, of course. If its determined that your case is RA or possibly another autoimmune disease, the only route the rheumatologist has will be immuno-suppressors which can do a great job in decreasing some symptoms, but do very little for your health (i.e. suppress your immune system, make you more prone to infection, cancer, parasitic infections, etc.).
You are definitely thinking the right way to look nutritionally.. If you would like another opinion, before or after you see the rheumatologist and a different approach, just let me know. Visit our website at www.healthworkstx.com to see if a whole body approach resinates with you. If you have any other questions, please feel free to contact us directly. If our office is not convenient to you, we can recommend someone closer that takes a whole body approach as well. God Bless.

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My daughter was diagnosed with juvenile arthritis at 2, uveitis at 4 and ulcerative colitis at 5. She had blood tests and a colonoscopy biopsy for Celiac and they all gave back negative. The biopsy is the key to diagnosing it according to my daughter's GI doc.

Once we had the UC diagnosis, I put her on the Specific Carbohydrate Diet (www.breakingtheviciouscycle.info) which is gluten-free among other things and her inflammation has dropped dramatically. She is still on Methotrexate and Humira but I am hoping her next test results will convince her doctors that diet does help enough to try weaning her off one or both of them. She is also taking Low Dose Naltrexone, which seems to help many people with autoimmune illnesses without costing a fortune or having any major side effects. Look into SCD and LDN as possibilities to help your health once you figure out what is going on.
Hope you can get answers soon!

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My heart goes out to you and I pray you will find a doctor to help you. I HIGHLY recommend Dr. Chalmers for your situation. He is a holistic chiropractor, which you may laugh and think that that is so far fetched to go to him when real MD's can't help you. Well, my own pediatrician does not go to MD's and goes to him for her healthcare. He does perform a QRA test, and it has NEVER steered me wrong. From digestion issues, to hormones, to my daughters asthma, to my chest pain, to the allergy of a pet, the swine flu---really you name it he has helped me treat the issue at it's core and feel better than ever. The process is not covered by insurance but I can not tell you how much it has saved me in stopping all the doctor's visits. I trust Dr. Matt and that is who I now claim as my doctor. Feel free to contact me if you have any questions......

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You need to have the intestinal biopsy to rule out or confirm Celiac. My symtoms were similar to yours, hair loss, fatigue, flatulance, scattered brain but also weight gain, diarrhea and random vomiting. I struggled with my weight since I was in jr. high. I was misdaignosed over 20 years ago with IBS and after being diagnosed over 2 years ago with Celiac my extra weight just fell off and I feel great! Autoimmune diseases are hard to diagnose because so many of the symtoms over lap. Keep looking and try a new doctor until you get an answer. Don't be like I was and just think "Oh well it must just be me and I'll just have to live with it!" I hope you find an answer soon.

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My son has Celiac Disease and, sorry to tell you, but the only way to get a definitive diagnosis is to have the endoscopy done! Your symptoms don't sound typical BUT they could be - my son had continual vomiting, diarreah, stomach gloating. You could try giving up gluten to see if that helps, but before getting any further medical tests done you would need to ensure that you have been eating a gluten rich diet for at least 6 weeks. Going gluten free is not easy - it is very expensive and makes eating out a struggle at times - but it can be done, although my son was diagnosed at a very young age so he has no memory of a 'normal' diet! I would also say you need to find a different gastro-Enterologist though as, even after diagnosis, you should still have annual check-ups to monitor your tTG levels (this should be one of the blood tests you had?), iron levels and bone density scan amongst other things. Good Luck with your diagnosis, and I hope things turn out OK for you.

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Do you know of any chiropractors in the area that could test you? Our chiro tested my family and we all are intolerant of different foods. Pretty much everyone has food intolerance issues because we become intolerant of what we eat the most. Going gluten dairy sugar free has really made a big difference in my family. I feel a million times better.

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I have not read responses...so if I am repeating others...bare with me.

You need blood work done. If you have not had any form of wheat for an extended period of time though the results are not going to come back correctly.

The symptoms you are describing do sound to fit a Wheat allergy. There are other auto-immune diseases though that have similar effects on the body.

I finally gave up with my Doctor. I went and saw a Naturopathic doctor.

I had everything from rapid weight loss, consent diarrhea after eating anything with Wheat. I would spend almost an hour if not more doubled over on the toilet in the evening just because I was hurting so bad.

If you cant get your doctors to look into testing you more seriously go see a naturopath. I am not one to try and ''PUSH'' that life style on people, but it was the place I could get people to really listen too me and help me be proactive once we figured out what was going on.

Good luck. I know first hand how miserable you are feeling. I waited almost two years, listening to my regular MD. I was wasting money faster then we could handle with visits and lab work being done...to know it was easy as going some place else for a GOOD second opinion was great...just wished I had done it sooner:)

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I had various problems for almost 10 years. Psoriasis, depression, chronic fatigue, and was having intestinal problems. The various doctors I saw never connected any of these ailments. I had been on a low-carb, no sugar diet to see if my blood sugar was the cause of my fatigue. Finally, one morning I was about to eat breakfast and made the decision not to eat toast, and at that point the Lord spoke to me and said, "It's not the sugar. It's gluten." I'd never heard of gluten. I went to my computer and googled it and found all my symptoms. I immediately when gluten-free. It took six months for my intestinal problems to heal, but within two weeks I didn't have the brain fog I'd had for so many years. My psoriasis started healing, and now I break out only when I've eaten something I was unaware of eating.
My girlfriend lost all her hair before finding out she was gluten intolerant. I met her after she lost it and thought she was in chemo treatments. Now she has a full head of hair after 2 years gluten-free. Both of us NEVER were diagnosed by a doctor. We just decided to watch every bite we put in our mouths and finally got better. Read every label. Anything with MSG is forbidden, and restaurants use that in almost everything. And MSG has other names, so it's really hidden sometimes.
The secret of success in this is researching everything from the food in the grocery store, to the restaurants. There are sites you can go to for help.
My doctor told me there are actually 2 tests for gluten intolerance. The most common one is called the "poor man's" test because it only costs about $80. It uses indicators and can and often are wrong. The other test is quite expensive--around $1,000, and insurance companies usually won't pay for it. It's a more reliable test. But the best thing you can do is just avoid foods, seasonings, artificial flavorings, and in my case even soap and toothpaste with gluten to feel better. It takes time to heal. It won't happen overnight.
Good luck.

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Www.enterolab.com is a lab in Dallas that takes a stool sample and the only non-invasive test with great accuracy. My daughter had classic symptoms and blood tests were negative. The stool, and gene test was very positive. We have been on the diet for 5 years, and has not missed a day of school since. She is now 11. We noticed changes in her within 2 days but I would give 2 weeks on a strict gluten free diet to get your answer if you don't want to test. Best to get off dairy in the beginning to give your body time to heal. We removed it for 6 months. Best decision we ever made for her. Best of luck to you!

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For my daughter, the tests were all negative, but she MOST DEFINITELY has it. I wouldn't worry about what the tests say, just eliminate Gluten from you diet and see what happens. Just know that it may take a while to get it all out of your system, so you may not feel all better immediately. It's worth a try!

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I do not have celiac's, my s-i-l does. She had a negative blood test as well. She ended up getting the endoscopy, which is how she got the diagnosis. She was also refered to an endocronolgist. While you wait on the drs, I would try eating gluten free, Just make sure you read every label, you would be amazed at the foods that have gluten in them. Also check your beauty products, there are several lotions & washes that my s-i-l cant use because they have gluten in them.

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I grew up with Ulcerative Colitis and HAD to do everything the doctors said because I was a child. There was NO internet and the medical community was "god-like" to my parents. If there had been an internet my mother would have probably treated me differently. I am now completely healed doing exactly the OPPOSITE of what the doctors told me to do. Anybody in the "natural" community would tell you it's a simple fix but it took me years to figure it out on my own and I feel great for the first time in my life.

The first thing anybody should do in almost any circumstance is to get your body to a baseline of good health. Building the immune system isn't hard, but it does take discipline and time. I believe there are three pivotal things that everyone should do for good health. First, good nutrition is essential. Second, all synthetic chemicals HAVE to be removed from your home environment and your diet (they ALL contraindicate with each other and cause a multitude of symptoms while breaking down our defenses). The third is principled chiropractic care. All your body systems works because of the neurological/nervous system and it won't work properly if your spine is misaligned.

Medical doctors treat symptoms. The "natural" community treats the body as a whole and knows that the immune system has to be strong. Living a life without UC has been like living life. If you'd like to talk, please PM me. I was 41 years into my life before I ever felt good!

God bless,
M.
www.squidoo.com/ifyourbabycouldtalk

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ReverendRuby is exactly right...diagnosis is based on a biopsy of the small intestine. There are serological (blood) test panels to identify those that require the invasive procedure. One of the panels that I am familiar with has five different tests. Your symptoms do not correlate with what I have been taught about celiac.

A few weeks after having my baby I started to get really bad stomach cramps (sweating and doubling over in pain) and diarrhea. I tried to detect a pattern with what I was eating and guessed it was an allergy to wheat... a blood test at the doctor's office confirmed it. Then they did a blood test for celiac disease it came back negative (although I know these tests may not be accurate). For me the only way to treat it is to avoid gluten completely. Since I developed this allergy in adulthood I know what all the foods taste like (and what I'm missing) which makes it very difficult.