CMG

If you test positive for Sjogrens Syndrome, what other tests should you have done on top of the SSA and SSB. Should you check for damage to other parts of the body due to Sjogren's Syndrome? Ex: Does it cause serious damage to any organs or other body parts. Right now I am experiencing dry eyes and mouth. Also having a problem with my gums receding. Thanks!

I'm in process of being tested for Sjogren's. My SS-A and SS-B were negative, but my rheumatologist still thinks I have it because of symptoms. I went to the eye doctor for testing of tears. First, he put dye in my eyes so he could watch and time how long the tear film protects the eye before it dissipates. One blink should protect for 10 seconds. He then put thin paper strips just inside my lower lids and left them for one minute. In one minute the tears produced should saturate the entire strip. Based on these two tests, the doctor determined the severity of dry eye. Next I went to an ENT for salivary gland biopsy. She made a small cut on the inner side of my lower lip and cut out about 5 or 6 salivary glands, then stitched the incision. (I had this done a week ago, and it's still really sore.) The lab looks for indications of chronic inflammation in glands sampled. I'm still waiting to hear back on next steps from the rheumatologist, but she did say that she will want more blood tests (I don't know if these are for Sjogren's or other autoimmune conditions - we're trying to figure out multiple issues) and that she probably will want me to have a scalp biopsy. I have had significant hair loss, and apparently that is consistent with Sjogren's as well as some other autoimmune conditions.

I second the suggestion to eliminate dairy. My daughter has diarrhea in every diaper for the first year of her life, until finally I eliminated dairy. Her intestinal issues improved immediately and would come back even if she had one goldfish cracker. So I had to read labels and not give her anything that had casein or whey in the ingredients. (She, too, chugged her milk. She loved it. But the change to soy wasn't too bad.) We have done several dairy challenges over the past several years. At this point it looks like she can have dairy in the occasional baked good; but, if she has cheese or ice cream (she hasn't had straight milk) the loose stools return immediately, and she sometimes has bowel incontinence from it, too. Our current pediatrician has told me that milk allergy and/or lactose intolerance are the most common cause of intestinal issues in children.

Good luck,

My 18 month old son has had diarrhea for about a month, with maybe one regular BM a week.

He's always had some loose stools which the pediatrician told us was probably normal up until now. Now she's bringing up celiac (which is terrifying me). Does it sound like celiac to you parents out there:

Things that support:

- Semi to watery stools -95% of time

- Dry skin on back of calves (very minimal and no where else)

- More tired lately, lays on ground to play

Things that seem not to support:

- No abdominal pain (that we can tell for an 18 month old)

- Very interested in eating (hard to get him not to eat)

- 90th percentile in both height and weight

- "Chuggs down" his milk or juice as soon as you give it to him (??? good or bad??)

We've been on a gluten free diet, for about 4 days now with only a slight change in BMs (first constipated, then loose again, now slightly more solid). How long should it take to see an effect? And must my kitchen be completely crumb free?

What tests should we ask for? My doctor is very into the "wait and see" approach but I need to know and start to change things. The worrying is killing me.

Sorry for the rambling, any advice is appreciated.

My 6-year-old daughter and I both are gluten free. My daughter loves to have toast for breakfast. After trying many gluten free breads and not liking any of them (I haven't tried Udi's yet, just learned about it) I finally bought a bread machine and a book called Gluten Free Baking Classics for the Bread Machine. There is a whole section of dairy free, egg free breads (which I need for my other daughter). It only takes a few minutes to get everything mixed up and into the machine and then I can forget about it. All the recipes I have tried have been really good. They also pass the test of my non-gluten-free husband.

Thanks! It's nice to be validated. I've spent a long time feeling like I'm just an out of shape, stressed out mom -- I'm relieved to know that I can do something about it. It's hard to wait, though, when I'm trying to be a mom of 3, wife, and lots of other things...Life goes on whether I feel good or not. I also have a son who complains of tummy aches more often than I like, he's forgetful, clumsy, and "in his own world" a lot. Very imaginative and smart and happy, but I wonder about him possibly having whatever problem I might have.....Another reason I want to get on with this....Looking forward to answers. Thanks so much...

I also have speckled ANA, and I have had low white blood counts for at least 15 years - also associated with auto immune diseases. My symptoms were a lot like what you describe. When I was 38 I was diagnosed with rheumatoid arthritis and sjogren's syndrome. I have never been diagnosed with celiac, although I do know that I carry one of the genes. I was gluten "lite" for 2 years, and have been gluten free for 8 months. Since going gluten free my arthritis symptoms have improved significantly and sjogren's has improved a bit. Also, I have a normal white blood count for the first time in 15 years. I have not had ANA retested.

Based on my experience, I agree with those who say try the diet regardless of what the tests say. Also, for the record, I started down this gluten free road after someone suggested that it might be the root of my daughter's tummy aches. She was 4 at the time and had daily tummy aches from the time she was about 2. Also various other aches and pains and like you describe your son "in her own world". She's like a different kid on the gluten free diet.

My naturopath has recommended 20 grams of protein within an hour of waking. She says that first hour sets your metabolism for the day and protein is important. As for the fatigue and fog, she says that's from overworked adrenal glands. As I understand it, the adrenals control your immune system, and the longer you were undiagnosed gluten intoleran/celiac, the more worn out your adrenals are from over work.

I'm still waiting for my blood work to come back on vitamin B, D and iron; but in the meantime, I'm taking adrenal support supplements that contain various herbs that should help the healing. There are various options in natural food stores.

We figured out that my daughter was sensitive to dairy when she was about a year old - long before we determined that she was gluten intolerant (she is now 6). We tested her with dairy periodically, and by about 3 1/2 I thought she was able to tolerate occasional cheese or yogurt. She started gluten free at about 4 1/2. She has continued to have periodic intestinal problems, and her current pediatrician said that dairy is the most common cause. This is the 3rd pediatrician who has told us no dairy. So finally, I have accepted that I need to be as strict about dairy as I do about gluten.

The current doctor did say that clarified butter (or ghee) should be ok. Also, on the lactose issue, she said there is an easy breath test for that if we want to do it. Probably difficult for a little one, but you eat some dairy (at the doctor's office) then breathe into a tube, which detects some gases that the intestines produce if it is a lactose issue. If this test is negative, then assume casein. We haven't done it yet, but I plan to.

how do yo find a doctor like that?

I found mine just by chance - reading this board. Someone posted a link to an article, and the doctor who had written it has a practice about 20 minutes from where I live.

I just did a quick search and found a site naturopathic[dot]org, which has a tool to find a naturopathic practitioner in your area. You also might try posting in the 'doctors' section of this board to see if anyone can recommend someone.

I also had continuing symptoms (mostly fatigue, cramping pain, bloating and irregularity) after eliminating gluten and casein. I did NOT want to guess or unnecessarily restrict my diet with an elimination diet. So I found a naturopath who heads a local IBS treatment center. He's also a celiac who believes that many gut symptoms are usually caused by celiac disease, food allergies, parasites, bacteria or fungus (like candida). He uses blood tests (ELISA) to diagnosed food allergies (or intolerances for purists) mediated by IgG, IgE or IgA antibodies. He uses stool tests to diagnose bacteria, parasites and fungus.

Since I had already eliminated gluten, dairy and soy (self-diagnosed from symptoms) before the ELISA test, that test diagnosed my cane sugar and egg allergies. A stool test diagnosed Klebsiella. After eliminating sugar and eggs and treating klebsiella bacteria, I still had lingering symptoms. Another version of the ELISA test (for herbs and spices) diagnosed vanilla and nutmeg allergies. I would have never guessed those allergies from 'elimination' diets, but accidental contamination since those diagnoses confirmed what the ELISA results said about vanilla and nutmeg.

Because I continued to have gut symptoms I continued to take regular stool tests which diagnosed 2 more bacteria, a parasite and candida during the past 3 years. An elimination diet would have never diagnosed those gut bugs. I've since eliminated all but the last bacteria, which I'm still treating with tapered doses of an antibacterial drug while I take probiotics to repopulate my gut with good bacteria. After I finish the antibacterial drug, I will take a very high dose probiotic (127 billion good bacteria per dose) for a week to quickly restore my good bacteria back to normal levels.

I realize that tests for food allergies and gut bugs are expensive. However, some health insurance covers alternative medical care (mine partially reimburses). Nevertheless, I might still be doing 'elimination diets' and maybe doctor shopping to determine the source of my symptoms if I had not tested for other allergies and gut bugs.

SUE

Very helpful information, Sue. My naturopath also does stool tests for parasites etc. My daughter has 2 parasites, one of which is "abundant". She currently is being treated. I also have a mild case of one parasite, but am not being treated yet, as I am allergic to the medication that was prescribed and I have not heard back about an alternative treatment. I'm interested in the ELISA test and will look into it. This has been a very frustrating process. My older daughter and I seem to react to all of the same things - gluten, dairy, corn, beef. My younger daughter has a whole separate set of issues - dairy, soy, egg, pork. So far. We are still in process of adding things back.

Catherine

Yes! I have a whole bunch of things bothering me. Joint muscle and headaches are the worst, and acne, weight gain and foggy headedness are bad too.

What kind of symptoms did you have? How long did they take to go away after starting? What are your reactions like? What kind of foods did you start out with? Sorry for all the questions....I just really want to know what it's like

Most of my symptoms had gone away after going gluten free. Most significantly, I have rheumatoid arthritis. I noticed a big improvement after going gluten free, then another big improvement on the elimination diet. Same with minor intestinal symptoms that continued even after going gluten-free. All the symptoms that you have mentioned are ones that my naturopath has indicated are typical of food sensitivities and that people see clearing after doing the elimination diet. Also, my eye doctor says I should expect improvement in my dry eye symptoms.

I started out with mostly whole fruits and veggies, fish and white meat, rice, quinoa, potatoes and such. I had to eliminate all the common allergens, some of which surprised me: gluten, dairy, soy, eggs, beef, pork, citrus, strawberries, corn, chocolate, vinegars, shellfish, caffeine, alcohol. (I've cheated a bit on the wine, but have noticed no ill effects.) Arthritis flared up when I added back corn. Heart palpitations from beef. So far everything else I have added back has been ok - soy, eggs, citrus, pork.

One of my daughters complained of tummy aches and some intestinal upset after eating beef. The other had big dark circles under her eyes, rash on her cheeks and was whiny and irritable all day after both soy and eggs. (I already knew she had issues with soy.)

I hope this helps. I'm happy to share more if you are interested - either on the board or by PM.

I am in the middle of the elimination diet for myself and my two daughters. We started almost a month ago. It is annoying, but also very enlightening. It also gets easier as we add back more items and notice no reactions. The downside is that that everyone seems to be reacting to different things, so I'm going to have to permanently modify my cooking accordingly.

Are you continuing to have symptoms that you hope to alleviate with the elimination diet?

My daughter's permanent teeth are coming in spotty and yellow. The dentist said it was from too much fluoride. I told him that was not possible as we just moved to where we are from a place that did not put fluoride in the water, I have never given her a fluoride supplement, and she didn't start using fluoride toothpaste until she was 3. He looked puzzled, then suggested that it was due to medication she was on as a baby. She never took any medication because she never got sick except for tummy aches. Then it became medication that I was on when I was pregnant. I wasn't on any. I told him that she is gluten intolerant and has been gluten free since she was 4. He said well that's possible, but we won't know until more teeth come in and we see if the enamel defects are symmetrical.

At least he had heard of the link between dental enamel defects and gluten, but he only considered it as a last resort after I brought it up and had demonstrated that not of the standard answers apply in my daughter's case.

I have the same strange symptoms after getting glutened. I thought it was just me. Not the cracking in the corners of my mouth, but blisters inside my lips and the whole roof of my mouth feels swollen or coated in something. Just not normal feeling. Unfortunately, it seems to last for a couple of weeks. All my other symptoms resolve in a few days.

I had a negative biopsy after a gluten challenge, and the only blood work I ever had done was after I had already gone gluten free. I still have severe reaction, both intestinal and otherwise, if I have even trace amounts of gluten. I also am sensitive to dairy.

According to my doctor, gluten intolerance also is an auto-immune condition, not an allergy. His view is that there are a lot of false negative biopsies due to the size of the small intestine (equivalent area to that of a tennis court!). Also, people with gluten intolerance might be experiencing damage/inflammation to the intestinal walls rather than the villi. Gluten intolerance also can cause inflammation to other parts of the body, which would explain associations with things like rheumatoid arthritis and various neurological symptoms. (I also have rheumatoid arthritis and sjogrens syndrome, both of which have improved significantly since going gluten and dairy free.)

This is just my basic understanding, but I hope it helps.

I did go the alternative medicine route many years ago, when my diagnosis was yeast syndrome / candida overgrowth. (In retrospect, I realize that the yeast-free diet I was on then was essentially gluten free. I should have stuck with the program!)

I am now just starting down that path again after self-diagnosing gluten intolerance. In both experiences, the doctors have been focused on finding the root cause, not just treating symptoms. Both also have addressed the need to identify and address additional issues for overall healing, including: secondary intestinal infections resulting from damage caused - first by candida, now by gluten; adrenal fatigue from years of stress on the immune system.

In both instances, the alternative medical practices that I have chosen include licensed MDs, so they are covered by insurance, to an extent. The exception is some lab work. Because these doctors order some non-standard tests that are performed by smaller (out of plan) labs, some of the lab work might not be covered.

The first time I went down this road it was quite expensive, but in the end, I was the healthiest I had been in my life. I'll let you know how it goes this time - both on the expense side and otherwise. I have my second appointment tomorrow.

Good question. The terminology seems to have morphed since I was digangosed with celiac disease 6 years ago and as mushroom indicated is in a state of flux. My current understanding, no - my impresssion, is that celiac disease is now being looked at by the scientific community as a subset of "gluten intolerance" that speaks particularly of an inflamatory condition in the small bowel with villi flattening. So "gluten intolerance" is a general term and "Celiac Disease" is a particular term.

But since the term "Celiac Disease" doesn't have a marketable ring to it that makes it easy to remember the media has popularized the term "gluten intolerance" so that now the general population is much more aware of the disease than just a few years ago and equates it with what we, the sufferers, know as Celidac disease. Try "Celiac Disease" on your neighbor or coworker sometime and you will see what I mean. You will get a "Huh? What's that?" look from them every time.

As mushroom indicated, when villi flattening and duodenal inflamation are not evident but gluten seems to be causing other health problems it may just be a matter of time before it progresses to the small intestine.

Though I use the term "gluten intolerance" because of its public recognition, I don't really like it because it communicates the same idea that "lactose intolerance" does. That is to say with Celiac disease there is more than just the discomfort, inconvenience and embarrassment of gas, bloating and diarreah; there is serious structural damage to the mucosa of the small intestine that has serious consequences when ignored.

Hope this helps.

I went to a new doctor recently who refers to "non-celiac gluten sensitivity". In his view it is still an autoimmune disease - it just hasn't damaged the villi and thus does not result in a celiac diagnosis. He referred to non-celiac gluten sensitivity as causing inflamation and symptoms in other areas of the body resulting in issues like RA, behavior issues in children, etc. He indicated that non-celiac gluten sensitivity is significantly more prevalent than celiac, and seemed to believe that over time non-celiac gluten sensitivity might lead to celiac. I hope this helps.

I went to Nice Matin for lunch today and it was excellent! And not pricey as I previously had thought. They have both indoor and outdoor seating which is always nice. I had grilled chicken with bacon and roasted red peppers on a toasted Katz's gluten-free Challah roll. It was delicious! The gluten-free brunch menu is pretty extensive.

I definitely recommend Nice Matin for your trip. In addition to being on the UWS (your desired locale), they have great food and a wonderful atmosphere. Sit at a table outside and you can do some great people watching

Thanks, Jillian! I love going to brunch - we'll definitely give it a try!

Believe it or not but adding in more meat alone can help with weight gain. I know it can be a challenge to get significant amounts of meat at each meal into a growing boy. That's a challenge I have anyway. I'm trying to get DS in the routine of having some protein with his snack and not just carbs. Also having 4 meals a day or 3 meals and a snack that resembles a meal or mini meal can help get the calorie quota for the day. Healthy fats are good. Nuts and nut butters are very good sources of calories. Sunflowernut butter is good for those who can't have peanuts or tree nuts. DS dipps apples in it for snack for breakfast. Avacados. If he can have eggs that would be good-hard boiled eggs are easy for snack, tucked into a lunchbox or for breakfast. Rice Chex cereal is very low in calories and I used to eat it for breakfast often but after needing to try to get my weight up I added in other things until I got at least 400 calories in each meal-so added some meat and a banana to breakfast. It sound like you have tracked calories? If not it can help pinpoint meals/foods that are lacking. There are some useful, free online programs.

I agree with Missy's mom, especially on the nuts, nut butters, and hard boiled eggs. They all are easy travel foods. We have a bowl of hard boiled eggs in the refrigerator all the time so they are available for snacks. In the car while driving from one activity to the next I usually bring nuts or trail mix to snack on. Also, I found at Whole Foods these 1 oz. squeeze packs of nut butters. I keep them in the car and take them while traveling on planes. Finally, I found today a rice based yogurt. Haven't tried it yet, but I'll let you know.

I recently had my gluten-free daughter into the pediatrician for tummy pain and intestinal issues. We already were mostly dairy free - occasional yogurt or cheese, and I still used butter for baking. The doctor told us that dairy, even small amounts, is the most common cause of intestinal problems and told us to eliminate it completely. This is the second doctor who has given us this type of information - before going gluten-free 2 years ago, I took my daughter to a different doctor for some very severe intestinal issues and his initial reaction was "this is definitely a dairy issue". Eliminating dairy improved her problems; then, eliminating gluten cleared her up completely.

I have not tried coconut milk because coconut used to give me migraines; but, my girls like Rice Dream ice cream. I also noticed recently in Whole Foods that they had a rice based cheese. We haven't tried it yet.

Good luck.

I just saw a new doctor this week who specializes in gluten intolerance. His view is it doesn't matter if you are celiac or "just" gluten intolerant. Gluten intolerant is also an autoimmune condition; and it is causing inflammation and damage somewhere in your body even if it has not destroyed your villi. He also talked about the possibility of gluten intolerance being precursor to celiac. Bottom line is you do need to be just as strict if you are gluten intolerant. He also told me that staying on gluten or doing a gluten challenge just to find out if it is celiac rather than gluten intolerance is a really bad idea - you can cause too much damage in the process. He likened it to feeding a high fat, high cholesterol diet to a cardiac patient to see if it causes a heart attack.

I went to this doctor specifically because of the types of concerns you are having - I wanted a "real" diagnosis that people would not question. I guess I'm back to square 1 in terms of other peoples' opinions on my decision to be gluten free; but, I think I finally got past my own desire for a diagnosis. I know I'm on the right track. It sounds like you are, too.

Thanks for all the responses! Looks like it will be easy to eat out, and I look forward to it!

I know you're not a cook - but I just pre-ordered on Amazon a Wheat Free Italian cookbook by Jacqueline Mallorca. I'm not sure when it is coming out; but, I saw her other book "The Wheat Free Cook" at Williams Sonoma and it looked pretty good. So, if you are missing your italian favorites, you might want to give it a try!

CMG- Thanks! I will definitely take you up on that..lol! She love powdered donuts, biscuits, pizza, ad she likes the softness of regular bread(example: wonder bread) Our Gluten free bread is kind of hard and the only way it tastes good is if I toast it..which she doen't like. IT's great to hear that the school is on board with the diet. That's a sense of relief to me. lol!

Vicky it's really sad that your own family notices the difference, but doesn't want to change huh? That's been the most aggrivating thing for me. They all notice she is doing better, but refuse to cooperate.

Unfortunately, I can't help much with donuts or bread. I have not tried any gluten free donuts, but I think I have read that Kinikinik makes good donuts. As for bread, I haven't found any soft/spongy gluten free breads, and I think most gluten-free breads are best toasted. I have made some nice, soft hamburger and hotdog buns, though. The recipe is from Gluten Free Baking Classics by Annalise Roberts. My daughter says the hamburger buns are just like wheat ones. I wonder if that recipe could be modified for bread? Also in Gluten Free Baking Classics, I found the best gluten-free pizza dough that I have tried. I had been trying many recipes and mixes for about a year and a half, and even my non-gluten-free Italian husband likes it! When there is any discussion of gluten-free pizza, he's always quick to promote the one that I make.

As for biscuits, I have two suggestions. If there is a whole foods near you, they have a gluten-free cream buscuit that my girls really like. Whole Foods usually has a gluten-free freezer in the bakery department. That's where you will find them. I also have tried a recipe for Baking Powder Biscuits in The Gluten Free Gourmet Bakes Bread by Bette Hagman. They are very simple to make and everyone who has tried them likes them. I have not found many recipes in this book that work for my daughter, so I don't know if that recipe makes it worth buying the whole book.

I hope these suggestions help, and I'm happy to help if you have more questions.

Catherine

Just curious, but has anyone had a low white blood count, particularly the EOS component, prior to diagnosis? I have had a low white count for as long as I can remember. I do not have an official celiac diagnosis because I went gluten free prior to testing. But, my current doctor says the consistently low white count is consistent with an autoimmune disorder and wants to repeat the test after 6 months gluten free to see if I get back into the normal range.

I have found replacements for many of the things my daughter used to ask for. Let me know what your daughter is asking for and I'll see if I can help you out with replacements. We've been at this for almost 2 years now (my daughter is now 6) and there is no longer an issue. Even when there are birthday parties at school, she turns down whatever is being served and asks her teacher for her gluten free replacement (we keep a stash in the teachers' freezer at school). She seems to know that she feels better gluten free.