mythreesuns

she said that endo. are much more reliable than blood tests, and even if I had been on the diet, if the endo. came back neg. then I don't have it.

I think a lot of us have proven (if only anecdotally) that not only is the biopsy less reliable than the endo, neither are very reliable at all.

Sadly, it seems that your dr is not very well informed about celiac. I agree with everyone else--stay on the diet since you KNOW you feel better on it.

I had a negative blood test and endo, but a positive result from EnteroLab (including the genes!)

Ultram is on the glutenfree list.

So next time I'll be sure to ask for the name brand.

Thanks, all!

Are you taking the generic for these brands or the actual brand itself? I know Ambien is gluten-free.

The Ambien is the name brand, tramidol is the generic for Ultram.

I have not been able to find any "butter" that doesn't have any of the above ingredients. I found a rice butter that was "dairy free, soy free" but had casein in it.

Oil is fine for my baked potatoes, but I really want something other than jelly to put on the yummy english muffins I found.

Any ideas?

Well, I saw her blood work. Here are the 2 numbers I saw: IgG 35, IgA 5.

I believe that an IgG of 10 or above is positive.

I agree with everyone else; try the gluten-free diet and look for improvement. There is no harm in a gluten-free diet!

Keep in mind, however, that if your child is eating gluten-free, future tests will most likely show up negative because of the lack of gluten in the diet....which is a good thing!

I was very impressed with the coverage, the whole story. However, my only fear is that all these people will push to get tested and only get the standard blood test and be told they DON'T have it (like I was) and then go on eating gluten.

I was hoping for some mention of the unreliability of the "standard" tests for gluten intolerance.

The first 4 days I was on it I felt a little nauseous, but not bloated.

Do you take it in the morning or the evening?

I'd give it another day or two to see if it eases up, then call your dr to get another med.

I've started having diarrhea and lightly colored, narrow stools. I've taken out soy, eggs, milk, and gluten, and these meds are the only thing I've added to my diet.

We are planning on going gluten free in about a week and would find it helpfull not to waste money on pasta that isn't any good. We usually eat speghetti, alfredo, and bowtie pasta's. What brands have you found to be close to "normal" pasta if any?

Tinkyada tastes the most like "normal" pasta, but you MUST rinse it after cooking. It takes a bit longer than regular pasta to cook, but it's worth it!

Wow, you guys are going to keep my busy for days looking at all the links!

Thanks so much

Toni, Dr. Barnes theory was if the basal temp. -- meaning first thing in the morning, and for a woman it needs to be during the first 15 days of your cycle, day 1 being first day of menstruation -- was lower than 97.8 that your thyroid was low, possibly subclinically low. In teaching natural family planning for 7 years, I personally think 97.5 or lower is too low.

When I was ttc around 3-4 years ago, my basal temp hovered around the upper 97's. Interesting...

Dr. Broda Barnes thought that temperature was a more accurate measure of thyroid. The posted website has info on it, or you can google Dr. Broda Barnes. I saw this over and over when I taught NFP and invariably the woman felt better either with thyroid or with some iodine (often it was a person who didn't use iodized salt).

Interesting.....specifically what about the temperature would tell you something about the thyroid?

I have had over the years periods of time (a week or more, up to a month) where my temperature was consistently about 95 degrees. That's also when I first got Reynaud's and they checked my thyroid.

It's generally been normal the last several months, with the exception of a few days a couple of weeks ago. I didn't actually measure my temp then, but I did get that same feeling as I did when my temp was low.

When I get the chance (work has been crazy) I'll check out the info on the web.

I have FM/MPS, and I agree with Lynne, the arthritis foundation book is excellent. I highly recommend the books by Dr. Devin Starlanyl-I believe there is a website, maybe google her name--She has FM/MPS too and her book on FM saved my sanity when I was first dx'd. I am so sorry you have to go through this too. I always am saddened when I hear of someone being dx'd with this--my doctor told me that "It won't kill you, but some days you will wish it would." How is that for support and guidance?! Believe me, since going gluten-free, the symptoms have lessened, and the tips that Lynne and others have given, plus the tips in the literature out there will make life easier, and you will reach a point where you find a treatment that works for you. It just takes a lot of experimenting sometimes. Take care.

Thanks so much for the support. I will definitely check out that book when I get a chance!

I'm sure others who are more knowledgable than I am, however, I believe that the blood tests only show up positive when you have ACTIVE uncontrolled celiac, where there is damage happening to your intestines at the moment. The blood tests are not sensitive enough to pick up celiac until it is in the later stages.

My blood tests came out negative as well, but I got confirmation through EnteroLab. I would say that since your blood test was "negative" you may actually have healed a little from the malapsorption and the damage done to your intestines by the celiac.

I'm sure I didn't explain this very well, but hopefully someone will come along and do a better job.

I am new here, my first post but I have been reading the board for a while now. I just rec'd my positive gliadin test results back, my IGA came back at 52. I am relieved to possibly have a cause for my odd symptoms but the one thing that I don't have problems with is my stomach. I have read here that Celiac's can have a range of symptoms but is it normal to not have digestive issues? My biggest problem is musle spasms and migraines. I went gluten free this past spring for 6 weeks, being very careful as to what I was eating and still didn't have any relief from the pain. It seems that most find relief within a couple of weeks. I would appreciate any input you all are willing to share.

Welcome, Diana!!!

You may be ingesting gluten "hidden" in the foods you're eating, or you may have other food intolerances as well. It doesn't have to say "wheat" in the ingredient list to have gluten in it. There are all kinds of products that you wouldn't even think have gluten in them, but they do.

Also, I found that milk gave me headaches just as much as gluten. Have you tried to do without milk (all parts of it) products? Soy gives me problems too, but mostly I get diarrhea from it.

Have you de-glutened your hygeine products? That's something else we don't think about at first, but it could still make you sick.

Some people do feel better in a couple of weeks, but some people do take longer, so hang in there! Don't give up just yet.

A friend sent me this....I thought it would be fun to post! Delete my answers and add your own!

1. FIRST NAME? Antoinette

2. WERE YOU NAMED AFTER ANYONE? my mother's mother and my mother's father (middle name...long story)

3. WHEN DID YOU LAST CRY? a few weeks ago with a really bad migraine when DH got mad at me for having the migraine in the first place

4. DO YOU LIKE YOUR HANDWRITING? nope

5. WHAT IS YOUR FAVORITE LUNCH MEAT? eww...

6. KIDS? 3 boys

7. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU? yes

8. DO YOU HAVE A JOURNAL? no

9. DO YOU USE SARCASM A LOT? it's my first language

10. DO YOU STILL HAVE YOUR TONSILS? yes

11. WOULD YOU BUNGEE JUMP? no. did I say no? because I meant HE!! NO!

12. WHAT IS YOUR FAVORITE CEREAL? any kind

13. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? depends...usually i don't wear shoes with laces.

14. DO YOU THINK YOU ARE STRONG? no

15. WHAT IS YOUR FAVORITE ICE CREAM? rocky road! can't have any, though

16. WHAT IS THE FIRST THING YOU LOOK AT IN A (WO)MAN? eyes and sense of humor are tied

17. RED OR PINK? pink, but not like a hot pink, like a smoky pink.

18. LEAST FAVORITE THING ABOUT YOURSELF? i overreact....to EVERYTHING

19. WHO DO YOU MISS THE MOST? haven't had to miss anyone yet

20. DO YOU WANT EVERYONE TO SEND THIS BACK TO YOU? sue, why not!

21. WHAT COLOR PANTS AND SHOES ARE YOU WEARING? black dress pants and black sandals

22. WHAT IS THE LAST THINGS YOU ATE? trail mix with all kinds of nuts and dried fruit.

23. WHAT ARE YOU LISTENING TO RIGHT NOW? Sirius radio on my work puter

24. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? blue

25. FAVORITE SMELL? popcorn

26. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? my FIL, which is odd because i hardly ever talk to him on the phone

27. DO YOU LIKE THE PERSON WHO SENT THIS TO YOU? um, sure!

28. FAVORITE DRINK? Electric lemonade---lemonade with vodka and blue curacao

29. FAVORITE SPORT TO WATCH? football!!!!

30. HAIR COLOR? dark brown which everyone thinks is black but is really dark brown

31. EYE COLOR? i call them my dumb brown eyes. boring

32. DO YOU WEAR CONTACTS? no

33. SCARY MOVIES OR HAPPY ENDING? happy endings

34. LAST MOVIE YOU WATCHED? uh....i have no idea because its been forever!

35. WHAT COLOR SHIRT ARE YOU WEARING? brownish-tan-with-a-hint-of-gray....an undefinable color, really. black tank top underneath as its cut a little too low for work

36. SUMMER OR WINTER? summer's too hot and winter's too cold. i like the fall

37. HUGS OR KISSES? hugs.

38. FAVORITE DESSERT? didn't i already say rocky road? other than ice cream, it'd have to be brownies

39. MOST LIKELY TO RESPOND? ??

40. LEAST LIKELY TO RESPOND? ???

41. WHAT BOOK ARE YOU READING? a book about fibromyalgia. oh, and i bought the new nicholas sparks book but i haven't started reading it yet

42. WHAT'S ON YOUR MOUSE PAD? nothing...it's one of those work desks with the pull-out mouse thingy that doesn't need a pad

43. WHAT DID YOU WATCH LAST ON TV? Brothers and Sisters....not counting the morning news

44. FAVORITE SOUNDS? my kids laughing

45. ROLLING STONES OR BEATLES? neither

46. THE FURTHEST PLACE YOU'VE BEEN FROM HOME? France

47. DO YOU HAVE A SPECIAL TALENT? i can play several musical instruments

48. WHEN WERE YOU BORN? July, 1973

49. WHERE WERE YOU BORN? New Jersey, some town you've never heard of in S. Jersey

50. WHAT IS YOUR OCCUPATION? research scientist

Thanks so much for bringing the topic back to fibromyalgia.

Having had Fibromyalgia and beaten it - can offer some tips. Chinese Acupuncture was great. Did wonders.

Also - get Thyroid checked. TSH, Free T3, Free T4, and Antibodies. Its the Antibodies that link it to Celiac. Autoimmune. And to make matters even harder. 10% of people with Hashimotos Thyroid don't show Thyroid Antibodies anyway.

www.stopthethyroidmadness.com explains how there is probably no modern diseases like CFS or FMS - just badly treated or undx low Thyroid. Mine was.

I have had my thyroid checked both times I had blood work done, so I really don't think it's that. Thanks for the tip!

Is Frizz-Eaze gluten-free? I know their hair spray is not, but I couldn't tell if anything else of their's was gluten-free. What shampoos and conditioners are KNOWN to be gluten-free? Gels?

Facial wash and facial lotion--what brands are gluten-free? Is Oil of Olay gluten-free?

Hand lotion--is Jergen's hand and nail lotion good? What brand do you KNOW is gluten-free?

Also, if I'm intolerant to soy, do I need to avoid soy in beauty products as well?

Ursula--how on earth did I end up with a duplicate post!? LOL

Oh, all right! [pouting]

Obviously, you guys are right, so I'll try to cut out EVERYTHING for a while and see what happens.

As for the casein, I knew on my own I was intolerant to that. The test wasn't included in my EnteroLab panel, because I just ordered the stool tests and the egg/yeast/soy test, and they included the gene swabs by mistake. I paid for that separately because I decided that I wanted the gene test after all.

So, because I didn't buy the whole shebang at once I didn't get the milk test thrown in for free.

Ey, yiy, yiy, soy is in everything that gluten isn't! LOL Maybe I'll stick to whole foods for a while.

Congratulations...let us know if we can help. I have multiple (and, still unknown, intolerances), and have found lots of good foods ... that I can now not eat.

Thanks so much!

I don't plan on being too militant about the eggs. I was eating 1-2 eggs a day at the time of the test, so I don't think the eggs will be much of a factor as long as I don't eat them all the time anymore. Is that true or are they just like milk and gluten?

I've already cut out soy milk and products made mainly out of soy because I already suspected soy contributed to my continuing diarrhea. Do you think that's enough, or do I need to eliminate "hidden" soy like I did gluten?

I sent them my stool and tissue samples exactly two weeks ago, and they just posted my results on their website. VERY impressed with their speed!

Anyway, this is what it says:

Fecal Antigliadin IgA 14

Fecal Antitissue Transglutaminase IgA 10

Quantitative Microscopic Fecal Fat Score 100

Fecal Anti Saccharomyces cerevisiae IgA 7

Fecal Anti Ovalbumin IgA antibody 10

Fecal Anti Soy IgA 11

HLA-DQB1, Allele 1 0201

HLA-DQB1, Allele 2 0501

Serologic equivalent HLA DQ 2,1 (Subtype 2,5)

And the analysis:

I am gluten, egg, and soy intolerant.

I have no signs of malabsorption (was gluten free for 6 wks prior to sample).

I have one celiac gene and one gluten-sensitivity gene. ALL of my kids will have at least one of these genes.

VINDICATION!!!!!!!!!! lol

loraleena.....Yes, it's the Western Blot by Igenex labs in Palo Alto, CA.

I had two blood tests AND the Western Blot. I don't have Lyme.

CONCLUSIONS: The SSRI citalopram significantly improves IBS symptoms, including abdominal pain, compared with placebo. The therapeutic effect is independent of effects on anxiety, depression, and colonic sensorimotor function.

Um, not true in my case. I have been on an SSRI for anxiety, and it did not affect my "IBS" in the least. All IBS means is that the dr doesn't know why you have diarrhea/constipation, not that its "psychogenic."

Anyone with "fibromyalgia" needs to also consider Lyme disease. They had my dx wrong all along. Found out I had Lyme, got treated and I'm doing GREAT!

Glad you're doing well. My primary dr already ruled out Lyme...twice!

she told me I was wrong, and by the way, if I would only start thinking more positive, my 'little aches and pains' would just go away.

Yikes!

Reminds me of my GI doc who keeps insisting "There's no chance you have celiac. I tested you for it. Twice. You don't have it." He also believes that my pain is due to colitis or Chrone's. Wonder what he'll say if my colonoscopy comes up roses.....

There will still be lots left to eat. It's just that we are used to eating a certain way and need to retrain our brains to eating differently. I don't usually eat breakfast anymore since I haven't figured out what else to have.

So what do you eat?

Sometimes it's better to know what you CAN eat and build from there, rather than think about all the things you CAN'T eat.

I am convinced that fibro is caused by food intolerances. It could be lectins (which includes gluten), or salicylates, or both, often in combination with nightshades.

Thanks, Urusula. This is kind of how I feel as well. What this dr did for me was to CONFIRM that something autoimmune was going on. I don't plan on stopping there! LOL

Have you had the celiac blood testing done?

You can see from my sig that I've had the traditional stool and blood tests for celiac, and I've also had an endoscopy for it. All negative.

I should have my results from EnteroLab this week or next--THAT is what I'm banking on. Like I said, the dr didn't convince me that I didn't have celiac, just that if I do, it's rearing its ugly head! LOL

Finally with the help of this board I figured out that my Fibromyalgia symptoms were caused by a legume intolerance.

Thanks...I will be looking into these other intolerances, like Ursula said. It just seems so daunting! I was so hesitant to start the gluten-free diet after already being casein free because of the restrictions. What's going to be left to eat?

Ah, well...I'll figure it out I guess.

Thanks all!