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Parasites


AliB

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Ms Jan Rookie
My parastitic infection got that bad. I just finished my medicine for it a week ago when I found out I also have Celiac. Up until a week ago I had no quaility of life. I had to stay in bed since November. Anyway yall get the point. I could go on and on.

I was also diagnosed bipolar even though I really dont think I fit the definition. Could brain fog from Celiac be at fault?

Hi Ginny,

what about keeping your dog on a more or less constant anti-worm drug ? I don't know if that would be harmful to the dog, but if not, it would be a lot better for you ...

Brain fog and bipolar symptoms, as well as loads of other diseases, can definately stem from celiac. My family is full of schizofrenia and other mental problems, and I've always struggled to stay within reality myself - and now I'm sure that my own problems (also the physical ones, like arthritis) origined with celiac, and probably also those of most of my other suffering relatives. Look in the 'behavior ...' section, you'll find lots of interesting threads on the mental aspects of celiac.

jan


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Ms Jan Rookie
I wonder if the Byetta had the same effect for me. One of the prominent side-effects of taking it is stomach and digestive issues and that led to my digestion collapsing completely. Perhaps the Byetta also encourages parasites.....

What is Byetta - and what is it made of ?

And I forgot, what did you take it against?

I think, just like antibiotics encourage the growth of candida and other fungi, probably cortisones and steroids and maybe other drugs, I'm not aware of, encourage parasite proliferation. I haven't researched the mechanisms at play though, so I don't know the chemistry of it, but I've read about the effect in several serious studies. Fx patients with hidden strongyloides infestations can die due to the sudden hyper proliferation of the S, if given chemotherapy or other immune suppressing treatments. Rather scary actually, so one has to be really sure to be rid of those bastards - and warn doctors about the potentiality of their existence - before going into other major treatments.

ginnybean32 Newbie
Hi Ginny,

what about keeping your dog on a more or less constant anti-worm drug ? I don't know if that would be harmful to the dog, but if not, it would be a lot better for you ...

Brain fog and bipolar symptoms, as well as loads of other diseases, can definately stem from celiac. My family is full of schizofrenia and other mental problems, and I've always struggled to stay within reality myself - and now I'm sure that my own problems (also the physical ones, like arthritis) origined with celiac, and probably also those of most of my other suffering relatives. Look in the 'behavior ...' section, you'll find lots of interesting threads on the mental aspects of celiac.

jan

He is on a monthly heartworm treatment that covers him for all kinds of worms but it does not prevent him from getting protazoa. Giriadia is a protoazoa and spread by feces of animals infested. Most people or animals get it from drinking contaminated water sources like ponds and lakes. Since its spread by feces and my dog eats other animals feces he gets it all the time. Flaygall is the treatment and another drug but I cant remeber the name...It is very hard to detect in stool samples so it is missed alot. My little poodle gets run down from it and sometimes gets a breakout of hookworms on occassion so thats how I got it or else I got it from possibly walking barefoot outside or in the house my doc says. Also since my immunity was low from Celiac I was easily infested. Matter of fact I have had thrush, strep, mycoplasma, h.pylori and many colds flus and pneumonias this last year because my immunity is so low. So thats why I got hookworm and giradia and none of my family have.

My symptoms that really caught my GI's attention was well the hookworm I actually found wiggling in my toilet after having a BM and my heartburn, reflux, nausea with some vomiting but not often at all, severe bloating, gassiness, white tongue, bad breath and belches. Some of my belches made me literally want to vomit. They say its the sulfur released by the protoazoa. Trust me you know it when it happens to you. The abd pain as well. Many of the symptoms are the same as Celiac so I guess thats why he tested me for everything. I also have very good insurance so fortunately I didnt have a financial barrier to tests.

None of the prescription parasitics bothered me other than the Alinia turning my urine neon green. That was pretty cool. My gerd medicine has more side effects than they did and I'll be glad when my esophagus heals so I can get off it. I did look into herbal treatment and asked my doctor about it. He said that you may or may not get rid of them and plus the drug rx is cheap and does the job a whole lot better. I think I paid 40.00 for 3 prescriptions to get rid of my parasites. I paid however 273.00 for one proton pump inhibitor to heal my esophagitis that was caused by the buggers. My insurance wont cover it but it is worth it to heal my upper gi tract quickly. I have just been so miserable so long...I reason its cheaper to get rid of the pests for good than to keep having to cough up money to clean up the damage they caused.

AliB Enthusiast
What is Byetta - and what is it made of ?

And I forgot, what did you take it against?

I think, just like antibiotics encourage the growth of candida and other fungi, probably cortisones and steroids and maybe other drugs, I'm not aware of, encourage parasite proliferation. I haven't researched the mechanisms at play though, so I don't know the chemistry of it, but I've read about the effect in several serious studies. Fx patients with hidden strongyloides infestations can die due to the sudden hyper proliferation of the S, if given chemotherapy or other immune reducing treatments. Rather scary actually, so one has to be really sure to be rid of those bastards - and warn doctors about the potentiality of their existence - before going into other major treatments.

Byetta was a new drug developed in the States from, of all things, the spit of the Gila lizard. It seems that natives used the spit to treat diabetes-type symptoms and the scientific community picked up on it. but of course they only extract the 'active ingredient' and undoubtedly throw out the rest of the natural substance which is likely why the side-effects are so severe in some people.

It may also depend on the type of parasites you are carrying! Perhaps there is something else in the spit that they throw out that helps keep parasites under control???

Since I was on it in 07 there have been recorded experiences of people dying from Pancreatitis because of it but I didn't know that at the time. Initially the Doc suggested it to me. I said that I would research it before making a decision about taking it to which he replied that by then I would probably know more about it than him!

At the time, the information that was available suggested that it was worth a try so I went for it, but after 3 months he had to take me off it as, in his words, "the sacrifice wasn't worth it'. by then I was in such pain with my stomach I didn't know what to do with myself. What I didn't know is that because I was already on insulin I should never have been given it in the first place. It only works for those who are still producing enough natural insulin.

Although I came off it in the October, the pain did not recede and just got worse until in the January my digestion just collapsed completely. The Medical Profession couldn't find anything wrong (not that they looked very hard!) - I had no gallstones or anything, but I did have the floaty, pale stools and raging diarrhea and it was that, when I got back from the Hospital after the second trip, that led my own research to the gluten connection.

Within 5 hours of removing gluten and dairy from my diet the pain went away and the diarrhea stopped, never to return. Whilst gluten-free did that it did not solve all my issues so I then went to the SCD. As that has solved more problems but still not all of them that is why I have ended up coming full-circle in my research back to pathogens and parasites.

I have eliminated pretty much everything else!

I thought this info was interesting.

Open Original Shared Link

I have ordered Ann-Louise Gittleman's book too - 'Guess who came to dinner?'. She points out that the reason parasites are not considered of much importance is due to a lack of education - most Doctors cover very little on parasitology during their training, which is generally reserved only for the 'specialist few'. Funny that - probably about the same ratio of those who know about Celiac............

Open Original Shared Link

Reading the reviews on Amazon is interesting too, to say the least!

purple Community Regular

Ginnybean and Ali...I can't believe all that you have been through...gosh...its heart wrenching. I am glad you are on here and seeking answers. I pray you will get well!

Thanks for sharing your stories with us.

Neon green urine, my dh gets that when he drinks gatorade but not so pretty...HA HA! ;):blink::rolleyes:

Ms Jan Rookie

Thanks Ali for the info - think I might get hold of that book as well.

Yes, Byetta surely sounds like having been a trigger of many ills for you. Whether it would have had a direct impact on parasites I don't know, but if it undermined your health, it would have allowed for proliferation simply because the immune system gets too weak to fight the parasites.

Interestingly, my sister who has a farm with horses told me that Vets no longer recommend half-yearly deworming of horses, because resistance to the drugs has become a great problem. So now only those horses who test positive will get a cure.

I had one of my bouts of headaches/vomiting yesterday simply from having had a salad in a restaurant with a friend on Friday (just can't allow myself to go out at present - really annoying!). Anyhow, it made me think about how even last summer, I could still eat lots of different things that I can't touch now. Then it was only 'too much' of carbohydrates, sugar and alcohol that really did me in. But eating more bad stuff, the parasites were well fed at the time and needn't eat on more difficult foods for them; whereas I guess now on the SCD the parasites are starved and therefore ready to eat anything they can, which then becomes even the tiniest bit of salad dressing or whatever ... and their toxins then make me sick in turn.

Wow, wonder how long one has to be on the SCD before this effect stops. Or, probably I'll have to kill all those parasites first ...

AliB Enthusiast
Interestingly, my sister who has a farm with horses told me that Vets no longer recommend half-yearly deworming of horses, because resistance to the drugs has become a great problem. So now only those horses who test positive will get a cure.

The problem it that that is ok as long as the tests do actually pick up a parasite infestation. If it misses it then the poor horse is in trouble. That too comes back to the problem with drug treatments. Perhaps if the horses were treated with herbal remedies like they always would have been in days gone by that wouldn't happen.

Then it was only 'too much' of carbohydrates, sugar and alcohol that really did me in. But eating more bad stuff, the parasites were well fed at the time and needn't eat on more difficult foods for them; whereas I guess now on the SCD the parasites are starved and therefore ready to eat anything they can, which then becomes even the tiniest bit of salad dressing or whatever ... and their toxins then make me sick in turn.

I think you may well have a point there - and I do wonder if that could be a trigger for the reaction a lot of people get with gluten.

I got glutened last night - boy did I know it. About 2 - 3 hours after having it I became so tired I couldn't keep my eyes open. By the time I got to bed my heart had started pounding, then I started with sweating and clamminess. My ears were burning hot as were my feet. Every time I tried to sleep my arms and hands kept getting pins and needles and going numb. The worse thing was that every time I did manage to drop off I would wake up in a high state of anxiety from another horrible nightmare.

i tried to sit up and read but I was so tired, yet frightened to go to sleep. By about 5am it had passed over and I was able to get to sleep, but that was a horrible night. Is it the gluten I wonder, or perhaps actually toxins excreted by parasites who feed on the gluten that causes the reaction?

We had gone out for a meal and I succumbed to a few chips (fries) and 3 sips of Stella Artois. Haven't a clue which one it was that did it but the rest was naturally gluten-free so it wasn't that. Have had the same meal (without the Stella) before without any problem. Terry and I always opt for the gammon as it is the only meal we can guarantee to be gluten-free. Adrian has assured us that the fries are cooked independently, but they might have slipped through the net last night. I will have to ring him and ask.

I have emailed Stella (Interbrew/AmBev) about it and am still awaiting a reply but did pick up just one little snippet off an old thread on here that it is not gluten-free. So that was probably the culprit. My daughter ordered one and my husband followed suit although he normally has cider (alcoholic). I don't normally drink with a meal so didn't order one but succumbed to 3 sips of their Stella. I won't be doing that in a hurry and as Terry normally does gluten-free too I will make sure he sticks to the cider in future.

Maybe the alcohol gives the gluten effect more clout!


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Ms Jan Rookie

Alcohol does me in even in very small amounts - like just one sip. In the SCD book, it says 'avoid beer', and normally I would think as celiacs we would have to anyway, since beer contains malt. don't know if stella artois is different, though. I've never been able to drink beer, makes me feel totally sleepy and heavy - and only when I realized I couldn't have gluten I finally knew why. If the poisoning is bad enough I get that clammy sweat as well. In fact, before going on my first candida treatment, I suffered with it all the time. Now it's only very rarely when I've ingested something I shouldn't.

But whether it's the direct gluten effect, or the parasites getting fed and their toxins hitting you is difficult to say. perhaps a combination of both. I remember reading that even the slightest deviation from the SCD, can cause a flare up of symptoms, exactly because it enables the survival of pockets of parasites/pathogens. Think it says something about it on the Pecan website, too. Hope you're better now.

Somewhere towards the end of this site there's mention of a negative interaction between Goldenseal and Insulin/diabetics, that I thought you might find interesting:

Open Original Shared Link

And to Ginny, yes it sounds like you've got to get your immune system going again on a broad range. Have you considered candida? And perhaps you might benefit from going on the SCD. That cleanses the body and slowly strengthens its ability to fight other ills - and it also makes it easier for you to see if you might have other food intolerances.

Evidently, when we've weak consitutions, we're much easier preys for parasites and candida, and they can easily become systemic, thus undermining our health in many ways. So as part of my own fight against parasites, I look to strengthening my entire health. I don't think we can avoid ingesting parasites from time to time, but for people with normal health they are no major problem. The immune system can fight them, and in any case they'll stay in the bowels where drugs/herbs can easily kill them off. So it's all about strengthening the immune system.

Ms Jan Rookie

I have consulted with my herbal specialist, who confirmed that the best approach when doing herbal treatment of parasites is to combine a number of different anti-parasitics for quite some period of time.

You've got to make all nooks and crannies of your body unliveable for the beasts, and that demands quite a committed effort. So I'm in for the long haul. but already I do feel improvements happening: I have more energy, my mind is clearer, I sleep very well. Also though my digestion is gurgling as it normally never does, it works without any upsets. The itchy, moving welts keep showing up on different parts of my body, but I do believe it's the ingrained parasites trying to find more hospitable environs, so I just have to keep making that impossible for them. Also they've become smaller and thinner, and show up most often in new places, so perhaps I'm rooting out colony after colony.

As part of my regimen, I'm taking wormwood capsules, but I have a feeling that the tincture might be more efficient. Any one having tried that ?

Purple, was it you secreting mucous from the nose? I've had a strange experience of a running nose and coughing up mucous since a few days into my treatment. And I normally never even get as much as a cold, so I do believe it's all part of the clearing out of the parasites and/or their toxins. But I don't know if it's similar to what you experience.

And Ali, I saw on the other thread that you're beginning to experience positive results. Do you have any sense of which part of your herbs are the most efficient?

Jan

AliB Enthusiast

I think in my case it is definitely the Wormwood that has had the most effect although since I had the 'glutening' episode I have not felt quite the same response with the 'movements' in my back. Don't seem to have gone backwards in my recovery though.

I am just waiting for humaworm to come back to me about a question I asked concerning taking it with diabetes and I will get on and order that. My treatment here is confined to just the bits I have on hand or have been able to get hold of - it looks like I need cloves for instance, especially with the full-moon approaching here B) and it would be easier to get everything in the one capsule than keep taking all the different stuff that I am doing at the mo.

I am definitely sleeping better and do have more energy. I also seem to be digesting my food better too which is a relief after all this time. Although the 'thumping' hasn't gone it is definitely better. Perhaps the little beggars were compressing one or both of the main blood vessels in my liver!! The very fact that it is improving when nothing else has worked, not drugs, diet or supplements, gives me great encouragement that I am finally on the right path!

purple Community Regular
I have consulted with my herbal specialist, who confirmed that the best approach when doing herbal treatment of parasites is to combine a number of different anti-parasitics for quite some period of time.

You've got to make all nooks and crannies of your body unliveable for the beasts, and that demands quite a committed effort. So I'm in for the long haul. but already I do feel improvements happening: I have more energy, my mind is clearer, I sleep very well. Also though my digestion is gurgling as it normally never does, it works without any upsets. The itchy, moving welts keep showing up on different parts of my body, but I do believe it's the ingrained parasites trying to find more hospitable environs, so I just have to keep making that impossible for them. Also they've become smaller and thinner, and show up most often in new places, so perhaps I'm rooting out colony after colony.

As part of my regimen, I'm taking wormwood capsules, but I have a feeling that the tincture might be more efficient. Any one having tried that ?

Purple, was it you secreting mucous from the nose? I've had a strange experience of a running nose and coughing up mucous since a few days into my treatment. And I normally never even get as much as a cold, so I do believe it's all part of the clearing out of the parasites and/or their toxins. But I don't know if it's similar to what you experience.

And Ali, I saw on the other thread that you're beginning to experience positive results. Do you have any sense of which part of your herbs are the most efficient?

Jan

My left nostril will drip about 5 or 6 times a day. My bubblies/abnormal gas stopped after the 3rd day but I will continue the attack until my supplements run out. Our store is over an hour away so its hard to get what you need. I did a parasite cleanse 2-3 years ago. My dd did it with me and she had a black hair specimen that divided at the end, found on 2 different days. Weird abnormal looking things.

I have passed a little tapeworm so far. Does anyone ever get those pinchy/bitey sensations? That's why I did the cleanse previously.

Yesterday was the 6th day and I was bloated and a little gassy but the beans I ate may have caused that. I have a great immune system, my dh gets everything it seems like.

Just FYI, my capsules have Barberry, Gentian root, Grapefruit seed, Oregano extract, Wormwood, Quassia extract and Cloves. I post that incase anyone wants to research about those herbs. I am also taking garlic and pumpkin seeds.

Its good to hear you and Ali are improving daily!!!

purple Community Regular

This link is informative, I learned some new things...really gross stuff of course :rolleyes:

Open Original Shared Link

Could be the buggers causing my dd's gums to bleed...hm

AliB Enthusiast

...and what about this one - yuk!

Open Original Shared Link

purple Community Regular

eeewww...yuck :blink:

AliB Enthusiast

I have been reading about Castor oil as a purgative and parasite cleanser. That was one of the things my friend who was staying last week mentioned she was given as a child at the end of each month. It looks to be pretty useful so I might try and get hold of some. It is available in capsule form as well as liquid.

What I won't do is take it with the Wormwood prep I am taking at the mo as I did read that it should not be taken with 'Male Fern' and this prep contains that. I don't think the Humaworm does so it should be ok with that.

It seems to be a good follow-up thing after taking the parasite herbs. Take those, wait for a while for them to work then take the castor oil to get rid of them. Mmm, mmm.

AliB Enthusiast

PS. Go to the Humaworm website and read the testimonials. Quite the eye-openers. I love the last one - what a hoot!

purple Community Regular
PS. Go to the Humaworm website and read the testimonials. Quite the eye-openers. I love the last one - what a hoot!

One dd only has a couple of those symptoms but the other one had at least 12. She will be on a cleanse soon! She drools while sleeping if she can go to sleep then wakes up very tired. Has allergies. Can't taste or smell. Gums bleed. Headaches, backaches everyday. Bloating, can't ever lose the 10 lbs. she needs to lose. Has bloody stools a couple of times per year. Just had an infected toe for a year that is finely better. Last year she had a sluggish liver. Of course gluten.

We all have parasites whether we want to admit to it or not. A cleanse can only help...see a doctor guys, that knows about parasites!

Thanks for posting Ali!

Found pics of liver flukes on here:

Open Original Shared Link

Open Original Shared Link

purple Community Regular

Not sure where to post this but since it talks about bacteria...

Open Original Shared Link

She says "lack of healthy grain loving bacteria that help digest grains" can cause gluten sensitivity...something to research some more...

And lack of enzymes...

Any thoughts/links/research/info???

Gee its 1 am...thinking of you Ali ^_^ good night!

Ms Jan Rookie

Thanks Ali and Purple for some really interesting links. :)

One of them also gives a good explanation for the mucous that I'm producing these days - and a red right eye that I first thought was infected, but is more just like irritated and need to be washed out with saline solutions.

I also feel that the wormwood is the strongest remedy, at least until I yesterday added clove oil. Wow, did that produce an effect! I take some drops in a glass of water (warning: it's very strong!), but it was like attacking all the beasts from another angle. When going to bed I felt really good, then suddenly getting an intense itch on my left arm, and the upper arm was filling up with the linear welts and even some strange hives that I initially thought might be an allergic reaction to some of the herbs, but then realized that it wasn't like other allergic rashes/hives I get (from ibuprofen etc). And reading one of your links it totally tallies with the poisons spewed by some parasites to try to protect their living environs. So disgusting!! But I'm not going to let them protect any area ...

My regimen is presently: Liquid grape fruit extract, olive leaf extract, clove oil, wormwood as well as the paratrex and raw garlic. Then I felt that some cranberry juice I drank against a slight urinary infection, also had an impact on other issues. And now I've read how it helps producing an unfavourable environment for parasites. So I'll continue on that one as well. I do feel I'm running half a pharmacy here ... but as long as it's working I'll keep doing it. and btw, I'm drinking pau d'arco tea as well, which I feel is like a low key remedy, but something that helps support the entire body.

Later I might move on to Humaworm, so pls keep me posted on how it's working. Do they have european distribution?

Surely, I do believe I've finally found the missing link in my lacking ability to heal totally. :D

And personally, I also believe that research will at some point find a general connection between parasites and gluten/other food intolerances .... Let's hope the medical profession will one day look into this issue ...

Jan

AliB Enthusiast

I thought that was interesting on one of the Humaworm testimonials that one person had rid of 'floater's in the eye after taking the course. I have had those as far back as I can remember.

I was told when I was 20 by a doctor in a large teaching hospital in London that 'they are very common but we don't know why some people get them'. Duh - parasites???

I had a bad night - I was hungry from around 4am. The 'worms were biting' as my Dad used to say. But I was too tired to get up and do anything about it.

I have a lump by my coccyx that makes sitting uncomfortable. The Doc as usual dismissed it as of nothing of importance but it is a bit sore and hurts when I sit and I have to keep shifting from one cheek to the other. It was fairly bad around the time my digestion collapsed but it hasn't been so much of a problem for the last few months until now - funny it should suddenly flare up. I wonder if it is a cyst packed full of angry beasties!!!

I really must get on and order the Humaworm. It is interesting that other people have tried other preparations with similar herbs yet have not had as good a result.

Jan, it is only available from the States. We have such strict regulations over here in the UK about what can come into the country for general sale that they probably wouldn't be able to export it over here.

The postage cost is no more though for shipping it to the UK so I wouldn't have thought the EU would be any different - it is just the longer wait for it that is the only difference.

I remember that quite a few on this forum tried Humaworm with differing results but I did pick up that apparently the people at Humaworm can tailor the stuff to your needs if you are sensitive to anything. Mind you, if any kind of sensitivity showed up it would probably be down to some parasite or other chucking out toxins in response to the treatment! Perhaps it is not us that are sensitive to certain foods/herbs but parasites!

One person had a problem with Senna. If she had intestinal worms they aren't going to give up without a fight so I wouldn't put it past them to cause some kind of problem with it. I think sometimes you just have to work past it to get the better of them. I have had issues with quite a few of the parasite remedies in the past - couldn't eat pumpkins seeds a few months ago as I got a reaction from them, but am ok now, so maybe the SCD has changed enough of the environment down there for the seeds to now work.

Interesting.

Jestgar Rising Star
One dd only has a couple of those symptoms but the other one had at least 12. She will be on a cleanse soon! She drools while sleeping if she can go to sleep then wakes up very tired. Has allergies. Can't taste or smell. Gums bleed. Headaches, backaches everyday. Bloating, can't ever lose the 10 lbs. she needs to lose. Has bloody stools a couple of times per year. Just had an infected toe for a year that is finely better. Last year she had a sluggish liver. Of course gluten.

We all have parasites whether we want to admit to it or not. A cleanse can only help...see a doctor guys, that knows about parasites!

Purple, cleanses and herbs can be very dangerous for small children. When you post about these things in conjunction with your kids, please make their ages clear so that someone else reading the thread doesn't think it's appropriate to 'cleanse' a young child.

angel-jd1 Community Regular

Ladies and Gentlemen....just a friendly reminder that we are here for the purpose of talking about Celiac Disease. We are not here to venture onto other topics unrelated to celiac disease. There are pleanty of other boards out there to discuss parasites and such. I believe this thread has gone WAY beyond what this board is about. I kindly suggest we let it quietly go away....... :) Back to the topics that celiac.com is all about....gluten, celiac, intollerance to gluten :)

Thanks!!

-Jessica

A Celiac.com Moderator

purple Community Regular
Purple, cleanses and herbs can be very dangerous for small children. When you post about these things in conjunction with your kids, please make their ages clear so that someone else reading the thread doesn't think it's appropriate to 'cleanse' a young child.

sorry, dd was 14 or 15 at the time.

Mtndog Collaborator
I have a lump by my coccyx that makes sitting uncomfortable. The Doc as usual dismissed it as of nothing of importance but it is a bit sore and hurts when I sit and I have to keep shifting from one cheek to the other. It was fairly bad around the time my digestion collapsed but it hasn't been so much of a problem for the last few months until now - funny it should suddenly flare up. I wonder if it is a cyst packed full of angry beasties!!!

It's probably a Open Original Shared Link which is filled with skin and hair.

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    • trents
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      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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