New To This Board

[farofa]

duplicate: deleted

[Lisa]

Alex,

Welcome to the Board. I am not the best one to comment, as I am sure that others will post. The board is sometimes quiet on the weekend. But soon you will get some educated responses.

Sometimes people without Celiac, do feel better on the diet. Nini (here on the board) has a beginners list of intital things that you should do, eat,....

This is a good place to be. Stay tuned.

Lisa

[Daxin]

Welcome to the boards Alex,

First off, if you doubt all the new blood work, you should have it checked again.

Were you off gluten when you had the scope done? If so they results could have been negative.

I am still new to the whoel celiac thing myself, but I have found thepeople on this forum to be among the most helpful, friendly people there can be. We all support each other and there is a TONNE of great advice out there on this board.

I hope you figure out what is cousing all your grief, and get it sorted out.

If you felt better on the gluten free diet, then go back on it. No one was eve made SICK by going gluten free. IT can be tricky at first, but there are some good link here. Do a search for the newbie kit, and start there.

Hope you feel better soon. Again, welcome to the forum!

[farofa]

Hi, Thank you both for the instant replies. I do feel welcome.

For the sake of clarity:

I was on a gluten free diet (not perfect, but gluten free all the same) for six months prior to doing the endoscopy.

About 15 years ago wheat, rice and peanuts allergies were noted. No one suggested I do anything about it, so I didn't.

I don't understand the significance of the IgA and IgG deficiencies but know they make diagnosis for Celiac or Gluten Intolerance difficult and that I can not have a blood transfusion.

Thanks again for your warm welcomes.

[Lymetoo]

None of my doctors have been able to explain the IgA and IgG deficiencies.

I'm new too, so I don't know what you mean by IgA and IgG deficiencies. Could you explain?

[farofa]

I'm new too, so I don't know what you mean by IgA and IgG deficiencies. Could you explain?

I can't really explain. I have read a lot about it and it keeps going out of my head. It has to do with Immunodeficiency disease. IgA and IgG immonoglobins have something to do with protecting the body from infection.

[CarlaB]

Hi, Thank you both for the instant replies. I do feel welcome.

For the sake of clarity:

I was on a gluten free diet (not perfect, but gluten free all the same) for six months prior to doing the endoscopy.

The bloodwork was done by an allergist I did not trust. I don't know what the bloodwork for Celiac or Gluten Intolerance entails.

I wanted to make mention that I'd been tested about 15 years ago for allergies and was positive (though mild) for wheat, rice and peanuts. No one suggested I do anything about it, so I didn't think to. Do allergy tests have any relevence here?

I've seen so many specialists for the PMDD and am doing some of fertility workup too, which now seems to be a symptom of malabsorption, I'm a bit confused about what to do next.

None of my doctors have been able to explain the IgA and IgG deficiencies.

I'll check the newbie packet.

Thanks for your advice and warm welcomes, its good not to be alone with this.

Alex

Welcome to the board!

This is my understanding, with IgA and IgG deficiencies, your testing for celiac would show that you don't have elevated levels even if you have celiac disease since you are deficient.

If you were mostly gluten-free for six months prior to your endoscopy, you definately could have had a false negative. Mine was negative, and I was gluten-free for six months prior but did an insufficient gluten challenge. I added gluten back in my diet, but did not eat it every day, only did it for six weeks, and consumed only small amounts of it.

I tested with Enterolab because you do not have to be consuming gluten for the tests; however, I would talk with them prior to testing with them because of your IgA deficiency.

Dr. Greene would not be a bad idea if you can arrange it as he's an expert. I definately would have chosen that route!!

Allergy tests would not show celiac disease as it's not an allergy.

[farofa]

Carla,

Thank you so much for such clear answers. Of course, they bring up more questions...

This is my understanding, with IgA and IgG deficiencies, your testing for celiac would show that you don't have elevated levels even if you have celiac disease since you are deficient.

Would it explain esophogitis or swollen intestines? Is this symptomatic of Celiac?

If you were mostly gluten-free for six months prior to your endoscopy, you definately could have had a false negative. Mine was negative, and I was gluten-free for six months prior but did an insufficient gluten challenge. I added gluten back in my diet, but did not eat it every day, only did it for six weeks, and consumed only small amounts of it.

I ate a piece of toast and some cake the day before the test. That was it.

I tested with Enterolab because you do not have to be consuming gluten for the tests; however, I would talk with them prior to testing with them because of your IgA deficiency.

Good idea. I'll try to reach them.

Allergy tests would not show celiac disease as it's not an allergy.

I just read Dr. Kalish's page [Open Original Shared Link and understand the difference between allergy and intolerance a little better.

And, Carla, I hope not to overload you but I've read some of your posts with regard to fertility issues. Do you have any knowledge of subclinical miscarriage? Is it possible to be pregnant for a week and then miscarry prior implantation or to HCG levels increasing?

[CarlaB]

Would it explain esophogitis or swollen intestines? Is this symptomatic of Celiac?

I don't know.

I ate a piece of toast and some cake the day before the test. That was it.

This would not have been enough. For the endoscopy, recommendations vary, but the shortest I've heard is three months eating the equivalent of three or four pieces of bread. This means that my six weeks, eating a little gluten every day or every other day wasn't even enough.

And, Carla, I hope not to overload you but I've read some of your posts with regard to fertility issues. Do you have any knowledge of subclinical miscarriage? Is it possible to be pregnant for a week and then miscarry prior implantation or to HCG levels increasing?

It is possible to miscarry before implantation. In fact, this is one of the primary three mechanisms of the birth control pill that is little talked about (the other two are to prevent ovulation and to thicken cervical mucus). If you took your basal temps. each month (this means at the same waking time each day), then you could see if this is happening.

[Ursa Major]

Alex, miscarriages are a common symptom of celiac disease, I've had eight miscarriages between two and five months, and who knows how many of what you call subclinical ones!

Since you're IgG and IgA deficient, and were off gluten before your biopsy, both your blood tests and your biopsy were worthless when it comes to a celiac disease diagnosis. Seeing Dr. Green sounds like a great idea, if you are able to do that.

I think esophagitis is a common symptom of celiac disease, I had that. It's gone now.

Allergy tests ALWAYS have relevance. One reason for not getting better might be precisely because you haven't taken rice and peanuts out of your diet, in addition to all gluten and dairy.

All of your symptoms sound fairly typical for celiac disease, unfortunately even the thyroid problem. A lot of people with undiagnosed celiac disease eventually get thyroid problems.

Your thyroid may or may not improve on a gluten-free diet, depending on how damaged it is. Seeing a thyroid specialist might be a good idea.

Also, since your vitamin D is low (I hope you're supplementing now to bring it up to normal levels), your body can't absorb calcium and magnesium. I would suggest you get your bone density checked, to make sure you haven't developed osteoporosis yet.

[farofa]

Alex, miscarriages are a common symptom of celiac disease, I've had eight miscarriages between two and five months, and who knows how many of what you call subclinical ones!

Since you're IgG and IgA deficient, and were off gluten before your biopsy, both your blood tests and your biopsy were worthless when it comes to a celiac disease diagnosis. Seeing Dr. Green sounds like a great idea, if you are able to do that.

Dear Ursula,

Thank you so much for your reply. I've been digesting the information you gave me for the past day and think it has been most helpful. I'm so sorry about your experience. You have unusual strength to have survived so many miscarriages and to have brought a family into the world still. And now to be offering advice and knowledge from your experience. You are very special. Thank you.

I have also emailed Enterolab and will proceed with testing if they think that is advisable considering my IgA and IgG deficiencies.

I feel as though I am getting closer to solving this mystery. How were you able to determine that you had an intolerance to nightshades? Was it by experience or did you test for it? I think part of the reason the gluten-free diet hasn't been sufficient (aside from my newbie ignorance and getting glutened periodically and regularly) is that I may have an intolerance to rice or soy among other things. I'd like to know if Enterolab can test for those things as well.

Is there any benefit to doing the gene testing?

Thanks again for your words and support.

[rinne]

Alex, I'm glad you found this board, I am new to all of this myself but I've been learning a lot here. Welcome.

[Guest Robbin]

Hi Alex, and welcome. I had some of the same problems you have had. Subclinical miscarriages-Drs. just called them "failure to implant" miscarriages in my case. I had many infertility problems and after two very difficult pregnancies, I have two beautiful sons, but had to have a hysterectomy at age 34. I firmly believe it could have all been avoided if I had realized the gluten problems before.

There are some people on here that have seen Dr. Green, if I am not mistaken. Google search and check out their experiences, or start a thread to find out if anyone has any observations/recommendations about him.

I recommend Enterolab, especially if you are IgG and IgA deficient. You can be tested by them (via stool testing) even if you are gluten free for awhile. I echo the thought that you should send them an email or phone the lab with any questions to see if the deficiency will affect the test. I don't think it will, though because of the sensitivity of their tests, but check it out to be sure (enterolab.com) . Take care, and keep us posted on your recovery, as we are all like family here .

[Ursa Major]

Alex, I found out about the nightshades by testing for intolerances (even though I suspected potatoes were a problem for a while before that, I had no clue that tomatoes were the reason for my migraines, and peppers the reason for the ugly pus-filled pimples I kept getting). I figured out about lectins and salicylates after following links somebody posted here, and through an elimination diet.

I hope you will figure it all out. It took me a while (and I'm really still working on it), try to be patient and don't ever give up hope of being well. I never did, and finally figured it out, despite others thinking me foolish, and telling me to just take pills and to give up, and to stop 'wasting' money on vitamins, minerals and tests.

Well, I am not wasting any money on things like that anymore, since now I know that all I need to do is to avoid the foods that make me ill. And I know now what to take that actually helps, rather than making me worse (all the herbal remedies I used to try made me much sicker, of course, since they're all loaded with salicylates, what an irony!).

[farofa]

I'm glad you found this board, I am new to all of this myself but I've been learning a lot here. Welcome.

Thank you, Rinne.

I had some of the same problems you have had. Subclinical miscarriages-Drs. just called them "failure to implant" miscarriages in my case. I had many infertility problems and after two very difficult pregnancies, I have two beautiful sons, but had to have a hysterectomy at age 34. I firmly believe it could have all been avoided if I had realized the gluten problems before.

Oh, Robbin. It sounds like you've been through the ringer. Your experience, and Ursula's, have allowed me to feel a little more confident. Would you mind telling me a little more about how you were eventually able to conceive. If this is too private, I understand.

I've sent Enterolab an email. I hope they will respond in due time.

I will post a thread re: Dr. Green.

Thanks again, Alex

I found out about the nightshades by testing for intolerances (even though I suspected potatoes were a problem for a while before that, I had no clue that tomatoes were the reason for my migraines, and peppers the reason for the ugly pus-filled pimples I kept getting). I figured out about lectins and salicylates after following links somebody posted here, and through an elimination diet.

I hope you will figure it all out. It took me a while (and I'm really still working on it), try to be patient and don't ever give up hope of being well. I never did, and finally figured it out, despite others thinking me foolish, and telling me to just take pills and to give up, and to stop 'wasting' money on vitamins, minerals and tests.

Well, I am not wasting any money on things like that anymore, since now I know that all I need to do is to avoid the foods that make me ill. And I know now what to take that actually helps, rather than making me worse (all the herbal remedies I used to try made me much sicker, of course, since they're all loaded with salicylates, what an irony!).

Ursula,

Thank you for the encouragement. At this stage I think it helpful to do a bit of testing. My malabsorption problems haven't been resolved and I am hypersensitive to so much medication, I really ruled out that pathway. I suspect the food sensitivities are the answer, now I just need to determine what I've retained in my diet that is causing me such distress. I often feel best if I just don't eat at all.

Forgive the question again but how do you test for intolerance?

[penguin]

I don't really have anything constructive to add... But welcom!

You've definitely been gluten-free too long for testing to be accurate. Given your immunodeficiency, I don't know that enterolab would work either. It would show genes and malabsorption, anyway. For you, your best indicator would be dietary results, I would think.

I hope you find some answers soon!

[jukie]

Hi, Alex and Welcome!

I'm also a newbie here and am just starting to identify my intolerances so can't help much with that. I did want to comment on the fertility issues though, because I know from experience how difficult it can be. One of the most empowering things for me was reading "Taking Charge of Your Fertility" by Toni Weschler. Not that it solved all my problems, but I learned so much about my body and it's cycles...at the time it kinda made me mad that the info wasn't more mainstream (but I digress). Anyway, it can definitely help you identify subclinical miscarriages that might otherwise be missed.

What I can tell you for sure is DON'T GIVE UP! Not on identifying your intolerances, not on your thyroid, and not on your fertility. Despite my (at the time) undiagnosed problems with the first two issues, I did finally manage to have a sucessful (albeit difficult) pregnancy and now have a wonderful 4 year old son. Unfortunatley the pregnancy and the preceeding fertility rollercoaster kicked all my other health issues into high gear. Now my challenge is to get healthy enough to be a good mom and to hopefully keep my son from falling through the medical cracks (or maybe that should be "quacks") but I digress yet again.

Good Luck!

[farofa]

Thank you for your comments. I feel empowered by this community!

[Ursa Major]

Hi Alex, I didn't answer your questions sooner, because I was on a trip, visiting relatives in Pembroke and Ottawa, and didn't have access to a computer (never mind Internet).

My intolerances were identified through testing with a Vega machine. Only naturopaths have those, and not all of them, either. I know that some people think that those are quackery, but through Vega machine testing I had some of my intolerances identified, as well as the ones three of my daughters, my son-in-law and three of my grandchildren have. And they were undoubtedly accurate, as eliminating the offending foods made an enormous difference for all of us (for my grandchildren, it meant a total cure from severe eczema). And none of us have the same set of intolerances, with the exception of my twin grandchildren (a boy and a girl) both being intolerant to the nightshades as well (not the inheritance I wanted to give them for sure).