Lesliean

I wouldn't consider this a complete blood panel. I wouldn't rule out Celiacs based on this panel. Did the gluten free diet help you? What are your symptoms? See:

https://www.celiac.com/st_prod.html?p_prodi...-44105346207.ce

I'll wait for your post.

Leslie

Tori- My heart goes out to you. It is terribly negligent that you are treated this way and you have done an admirable job of learning on your own about what conditions might be effecting your health. It can be a lot easier to diagnose ourselves than to get the doctors to do a complete job of it. Oh, I hate to sound so negative but what is the big deal? The condition is treated by eliminating gluten and we beg them for that. It is not like we are begging for drugs! Your gluten free trial sounds quite telling. How could you not be gluten sensitive or Celiac positive with such a big change?

You didn't write what blood tests were performed but sometimes doctors do only a couple tests instead of the full panel and the sensitivity of the tests can be as low as 50%, missing fully half of Celiacs. See:

https://www.celiac.com/st_prod.html?p_prodi...-44105346207.ce

What I did after my blood word (incomplete blood work) came back negative (gluten free 3 weeks at that time) was to use Enterolab which doesn't require eating gluten as it is more sensitive. The full panel can do gene testing including the neurological gene markers, dairy sensitivity, anti-glaindins and malabsorption. See: Open Original Shared Link

My Aetna insurance covered it all and now I am testing my daughter. If the doctor wants to do gene testing and will consider that a positive test for you then it sounds like a good idea if they won't accept testing from Enterolab (if you care about what they say. Enterolab does not need an outside doctor's order). With so few people being diagnosed I don't hear of a lot of knowledgeable dieticians. I mainly hear that the internet lists of safe and unsafe foods is more information then they get from dieticians.

While you might also be allergic to wheat the two conditions are separate conditions. If you do have Celiacs you might also have a temporary problem with dairy as the villi damage to the intestines can reduce calcium breakdown. Make sure you take a supplement if you cut out dairy. Every symptom you mentioned sounded like Celiac disease to me. I think you are on the right track. It could be that you have more than one thing going on but I think you are closing in on the problem. The good thing about going gluten free is that the changes start happening (usually) quickly and seem miraculous.

Keep us posted.

Leslie

I think it is incredibly frustrating to have to deal with skeptical doctors and to bring in reams of professional articles and abstracts that they generally disregard, especially considering Celiac disease runs 1 in every 130 people and is only diagnosed in 1 of every 1000. Combine this with the terrible side effects of not being gluten-free like diabetes, thyriod problems, neuropathy, osteoperosis... Well, we are cutting edge on learning about this condition and helping to teach others, including doctors.

Ok, stress and celiacs-My understanding is that overloading or stressing the body can provoke the body into expressing Celiac disease when it had been dormant or genetically predisposing but not active before. See:

Open Original Shared Link

Because pregnancy is a huge stress on the body it can be the trauma that provokes the disease onset. Usually, when one person in an extended family is diagnosed others in the family have the disease too. See:

Open Original Shared Link

But once you've got it I think time and gluten snowballs into more and more symptoms. Could be it get worse with more stress but I couldn't find anything with scholar.google. com.

Leslie

Lots of people with Celiac/gluten sensitivity have bruising under the eyes but I am not farmiliar with bruising there. With over 200 symptoms of Celiacs it could still be a symptom though. I hope you will run it by a doctor just in case...

I had back and neck pain and was positive for osteopenia. I've been taking Citracil calcium supplements very carefully since I was diagnosed and my neck and back pain is gone completely. The villi damage of the intestines affects calcium absorption and 50-100% of Celiacs do have low bone mass. I look forward to the next density X-ray and feel confident that I will be closer to normal. No matter what your age when you start eating gluten-free the bones start absorbing a greater than normal amount of calcium and can regain a lot of lost ground. But, again I'd run it by a doctor in case it is something else. Here is a link about bone mass and Celiacs:

Open Original Shared Link

Leslie

Mary welcome to the boards! Did you have blood tests done too? What tests did they do? Keep us posted on the lab results. Usually the endoscopy results have to be read in the lab but what he said so far sounds like it could indicate damaged villi. This link is on scalloped duodenum. https://www.celiac.com/st_prod.html?p_prodi...-22105382255.f0

Are you having symptoms? Are you ready to go gluten free if you test positive? We will support you here. Good luck.

Leslie

To discouragedmomof5- For at least 7 years my periods have been 3 days long, stop a day and then pick up again for 3 days. Weird. For the last two periods (month 2 and 3 gluten-free) they have been as normal as a 20 year old (I am 48). Also gone are the yeast infections. I hope this answered your question. We all know that mood swings go with gluten too. How are you?

To Bean- I Had a constant pain in my belly 2 inches to the right of my belly button for 5 years that magically went away at 3 months gluten-free. I still plan to get a colonoscopy because I am about the age to start worrying about polyps but I don't hurt anymore. Mine hurt from the inside though and was not there for so long that I guess you could rule out cancer. I hope you will find it in yourself to eliminate gluten (assuming you are tested positive). The miraculous improvement might be the inspiration to staying that way. I am not as hungry now and enjoy an even greater variety of foods. My hypoglycemia is gone and I am not so tired all the time. There are substitute foods out there for just about anything you might crave. I know you can do it!

Leslie

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

Open Original Shared Link

Thanks for the info Paula on chewable Centrum Silver. Just goes to show you that you can't be too careful of each and every product. And maybe that we can trust out 'gut reaction' to products.

You have to be on gluten for any testing unless it is through Enterolab.

She should be tested for the following:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

You would benefit from a gene test too.

Some of your symptoms also sound a lot like lactose intolerance which can be independent or along with Celiac/gluten sensitivity because of temporary intestinal damage.

Does gluten sensitivity run in your family. Do family members have diabetes, thyroid disorder, neuropathy, IBS, migraines to name a few of the immunodiseases that go along with Celiacs often?

Good luck on Friday and keep us posted. I think internet sources are a great way to help guide doctors.

Leslie

My blood work was negative (not the whole panel though) after just 3 weeks gluten-free. I was not going to eat gluten for 3 months to get a positive biopsy. And a lot of gluten sensitive/Celiacs are negative on the biopsy. I have complete confidence in Enterolab. They say the testing will come back positive within the first 2 years and if it comes back negative to consider a gluten challenge. Check out there website at www.enterolab.com.

Missla3000- I so feel for you. Did you know depression is a major symptom of Celiacs as is fatigue and brain fog? I am glad you have a good doctor to check out all the possible reasons for your condition but everything you have said certianly sounds like Celiacs to me. When you go gluten-free you might be so happy with the results. You might find you get your life back and can enjoy your son so much more.

Ravenously hungry is common. It went away for me though, and for the first time in my life I was content with food. I too am a fitness freak and feel so much better now. Being a fitness nut did make learning what I needed to do easier. I was already used to self-discipline and conscientious eating.

If your blood work was positive, I think you are positive for Celiacs. The biopsy is checking for the damage from Celiacs and is not always required now. See:

Open Original Shared Link

for current articles on Celiacs and gluten sensitivity. The damage to the villi sometimes causes at least temporary problems with dairy too so you might keep a watch on problems with dairy (bloat, diarhea, gas-I know they overlap with the gluten symptoms) and you might need a calcium supplement for a while.

Please keep us up to date with you.

Leslie

Assuming you are positive for Celiacs, and keep us posted , you will learn the ropes quickly on what to watch out for and what to rely on. Medicines have to be checked out (like by googling it) individually and you check out each food that has natural flavorings, carmel coloring, and stay away from modified food starch... But you start getting a trust in certian foods and brands and expanding on that list over time. And some foods are quick and easy like avocato with salsa and a checked out brand corn chip (I eat Que Pasa in Alaska), or sweet potatoes and baked potatoes. gluten-free breads might be available in your store or you could request them. After a couple months you'll know enough to feel confident. And we are always here for you.

Kaiti, you are an angel on this board. You guide us all!

Cirrus16- I am on thyroid and am tested every year. I also had a bone density x-ray because so many Celiacs have not been absorbing calcium and because so many Celiacs have to give up dairy, at least for a time, because of villi damage. If you have osteopenia or ospeoperosis you will now absorb calcium at a great rate no matter what age you are. But your doctor might want to individualize a calcium supplement plan to help you (ie-Citrocil for instance, 500mg 4 times a day and don't worry about food you can be empty or full, just space the capsules out across the day).

Also B12 is often deficient so I recommend a subligual B12 supplement for a while.

Anemia is common so you might want to make sure you get enough iron if your CBC test showed low iron.

I thought my life had completely changed for the better after a week gluten-free but its been 3 months now and the positive changes just keep on coming (asthma medicine to 1/2 and throat clearing and allergies gone recently). I must have caught it early because I think its more common to get changes gradually over a year or more.

Leslie

I am astounded that your doctor would have positive blood work and say you might eat gluten. That is like having the EKG and heart tests that show blockage and saying that because the patient has not had a heart attack yet they might not have heart disease.

The biopsy can miss the damage or the intestines might not be very damaged-yet. It is a hard diet to get used to and even one crumb will give you all those symptoms you keep having. Flour in medicines, in the jam jar, on the counters, in soup, BBQ sauce, lip stick... It is so easy to eat gluten inadvertently and then think you are having symptoms of something else. I hear problems with dairy and soy a lot too, but always in addition to gluten.

Of course it could be something different for you, but my periods are regular for the first time in 10 years because of the GFD. If you have the gene test please know that they still miss at least 3 % of Celiacs that have other gluten sensitivity genes (DQ1 and 3 that are included by Enterolab). It is your life and you get to live it any way you want but if you chose to go gluten-free the people at this board would love to help you with a wealth of knowledge and support.

Good luck and good health,

Leslie

Dear gluten-free princess- I like that moniker a lot!

Have you considered Enterolab where you can be tested in the privacy of your own home without going back on gluten and also get the gene testing including DQ1 and 3 which are now accepted by some doctors as Celiac or gluten sensitivity genes? Mine was covered by insurance and the genes were DQ1 which my doctor didn't even test for.

Gluten senisivity is often misdiagnosed as IBS and the proof is that gluten-free you are well. After having my GP and asthma specialist both say I was negative for Celiacs and yet responding so completely to a GFD I had to 'go with my gut' on the matter. And then Enterolab confirmed it. I had the genes that often don't show positive on biopsy but still respond to a GFD and if not gluten-free will cause all the terrible complications of Celiacs.

Here is a website of helpful articles I also recommend:

Open Original Shared Link

Happy and healthy reading.

Leslie

While it could always be something else and so its great that you have a good doctor, all your symptoms sound like those Celiacs have. I presented to my doctor with trouble swallowing (GERD), trouble breathing (vocal chord and throat swelling), coughing and clearing (increase in mucus produced by the throat as a result of the inflammation in the throat) constantly. I was diagnosed with laryngopharneal reflux but I diagnosed the Celiacs and was confirmed by Enterolab. After 92 days (Yepee) gluten-free the throat swelling coughing congestion clearing and trouble breathing is gone completely. I think my entire gastro lining from mouth to butt was inflammed by gluten.

I hear on the boards racing heart beat a lot and while it could have to do with thyroid function, I also think it is an independent symptom to the gluten. My heart beat irregularly (I thought I was going to die) and now it beats regularly again solely becuase of living gluten-free.

The brain fog and fatigue are also common symptoms. I hope your symptoms go away with the GFD soon. They really don't sound like any fun at all.

Leslie

I read Centrum as being ok and Centrum Silver is what I take. I was taking a baby aspirin as well every day and found that to be the culprit as it is buffered with flour. Switched aspirin to Bayers. See https://www.celiac.com/st_prod.html?p_prodid=285

for centrum listing, Junior was listed as possibly containing gluten.

I know there are members with lots of experience with handling the set-backs and I remember reading about foods they go back to that seem gentle. I keep hearing the set-backs as lasting 3 weeks.

Hi Ally- Osteopenia and osteoporosis is present in 50-100% of Celiacs but I couldn't find the medical article right now. It is at brain.hastypastry. but they are down for a day or two more. Another article said 25% of those with lactose intolerance will have Celiac and the another that weeks after going gluten-free the lactose intolerance will go away in 25% of those Celiacs with lactose intolerance. I also read that it is being considered to recommend a Celiac blood panel screen to all patients who test osteopenia or osteoporosis. I don't remember the % that test positive from that study but think it was around 20%.

I am 48 and was tested at my own request years after a doctor commented that from looking at my chest x-ray she could tell that I had fractured my back. That had happened teaching skiing when I was 45 and it wasn't a really hard fall. I personally think all women should have a bone density x-ray at perimenapause as they lose 20% bone mass in the first 5 years after menapause. Since going gluten-free and taking calcium supplements my back and neck pain have gone away and I feel stronger.

If you have a low bone density from Celiac disease it will improve dramatically no matter what age you are. Just make sure you are taking enough calcium. There is something about Celiac caused low bone density that makes the bone take up calcium as soon as the intestines begin to heal. But you weren't lactose intolerant and the odds are in your favor that your bones are just fine! Let us know how you are doing and I'll add those web links next time.

Leslie

Judy- Every symptom you listed was one I had seen posted elsewhere as a symptom of Celiac. Like I hear reports of rapid heart rate a lot but am still not sure why it occurs. And the dry eyes could be sjogren's syndrome. And the peripheral neuropathy is so common too. Isn't it nice that they went away?

Isn't it like a wonderful miracle to feel all around better? Celiac can lower bone density so while the intestines heal it can help to be careful to get enough calcium. Anemia also is common as is B vitamin complex deficency, especially B12. Some people take sublingual B12. I like Centrum Silver because it is cheap and gluten-free. Some people like to add fish oil but I forget what they are adding back-just that they said it helped a lot. I love glucosamine. My knees don't crack anymore. Maybe it would help your joints. I know someone with arthritis (a common side effect of Celiac disease!) who found great relief in glucosamine (1500mg a day). If your stomach gives you trouble, some people like DGL licorice which is sold in health food stores and helps with the gassiness or burping. I drink a lot of green tea and medicinal teas like ginger and licorice.

My running was getting so difficult I thought maybe I was just getting old, but it was really just Celiac disease and I feel better than I have felt in 10 years.

Leslie

Please tell me whether or not you are eating dairy? The villi damage you refer to would have damaged the villi ends of the small intestines that are used to metabolize dairy and the main symptom of dairy intolerance is diarrhea (bloating, pain..). You might want to go off dairy for a while too, but, make sure you take a good calcium supplement like Citracil which can be taken on an empty stomach. Only 500mg can be utilized at a time so space them out throughout the day and take the recommended amount (I take 1500 to 2000 to catch up my skeleton which is low from years of intestinal damage).

Leslie

Thanks for the suggestion Ajlauer and your info Ianm. I really want to hear about all your symptoms. I said unusual at first because I thought it would be gory, but, this is Celiac.com and we expect gory. I hope everyone will share their symptoms, cus they are all important.

I debate moving up my first colonoscopy because I assume that would check that sore spot in my gut but at day 90 gluten-free it is all gone. Maybe I'll just wait till I am 50 for that test? Or should I have the colonoscopy because I bled and was sore for 5 years even though it is gone now?

Leslie

I was told I had vocal chord dysfunction when I really had vocal chord inflamation due to gluten ingestion. It took 6 doctors to finally diagnose it correctly and then it was my discovery that it was gluten that was causing the symptoms. Now that I am gluten free my breathing is completely normal. I wish for you the same!

Good luck,

Leslie

I want to applaud you Audrey for taking control of your health and researching this so well. You are on your way to guiding the doctors towards the right diagnosis (whether it be Celiacs or not). We are behind in diagnosing Celiac disease (estimated around 1% has it and .1% is diagnosed) but with informed patients like you, more people will benefit and be treated. Please post the blood work results and how it went.

Leslie

Good Luck!