New Here W/ A Million Or So Questions (Important Ones Though)

[jjb1234]

Hi all.

I am Jen.

I do not know if I have celiacs or not. At the very least I have some sort of sensitivity toward some component of wheat and certain grains.

I have numerous chronic health issues as does my 6 y/o dd.

Hers are more significant though and I am always looking for answers ... more answers.

As a child I always had strept, frequent fevers, frequent GI issues and later as a teen frequent UTIs (or so they thought ... actually what I had was interstitial cyctitis)

As a young adult had chronic fevers, sometimes as high as 105, continued having GI issues and would later be DXed w/ gastroparesis, H Pylori, IBS etc, have been DXd w/ fibromyalgia & CFS but I question both of those. In recent years DXd with connective tissue disorder, autonomic dysfunction and possible mito disorder.

While preg with my daughter I had hyperemesis the entire time, mild preeclampsia, a partial abruption at 28 weeks w/ preterm labor.

My daughter had a stroke somewhere around birth resulting in hemiplegia (cerebral palsy effecting one side of her body)

She also has seizures, more significant autonomic dysfunction, migraines and possible mito.

She had pretty poor growth her first year of life. Her stools were often large, bulky, pale and frothy. Her feet salty. Tested neg for CF. Always had either loose stools or constipation. I suspect she also has gastroparesis.

At age two she went on a modified keto diet. I cut all wheat and most grains out of her diet. Her health improved quite a bit and she gained some much needed wt.

Because of my hyperemesis, there were only certain foods I could tolerate ... white bread and wheat crackers were a couple (both foods I normally know to avoid)

While there are plenty of reasons for my daughters stroke, I have often wondered if my diet could have possibly have been one.

In recent weeks, I have been more intolerant than ever to wheat and certain grains (rye & steel oats)

Pretty consistently when I eat any of these products, the next day I end up with intense lower GI pain with loose stools. It will take from 15 minutes to a half hour to pass stools and when I do it is extremely painful I think due to cramping or contractions or something.

I get very sweaty, feel like I am going to pass out, sometimes vomit etc. Feels a great deal like food poison.

So here are my questions

1. Does the next day food poison like symptoms sound celiac-ish?

2. Are there other wheat intolerances other than celiacs that might do the same?

3. I recently read up on a connection between celiac & stroke ... is there anyone here on the forum w/ this experience?

My daughter who had a a typical stroke also has episodes that resemble TIAs, but might be seizures or migraines. I have a brother that also has seizures and recently began having similar episodes and he too doe snot know if they are TIAs or seizures.

4. Any connection between celiac & mito dysfunction?

5. RE: testing and finding a physician, do I really need to find a gastro that understands celiacs or will any GI due in terms of doing the actual test?

Thanks,

Jen

[Lily127]

Hi Jen

I'm too new to this myself to really address your questions but I will say I too have been diagnosed with Fibro, IBS, CFS and IC (as a youngster). I gave up gluten about 3 months ago and my bowels have improved alot. The rest has yet to improve but I think it takes more time.

The first thing I would do is just try to stick to no gluten for now and while you're doing that try to learn more slowly from other members. It's all very complicated but I do know one thing. I went from having Diarrhea 5 times a week to once or so a month (and that's usually due to constipation backing me up until trouble starts). I also had what you have in that a bout of D wouldn't just come and go, it would be hours of cramping and pain as it worked it's way down and then out. Allnighters is what I called them. I'm very very glad not to have to deal with that too often anymore. Good Luck. Stay gluten free!!

[Skylark]

1. Does the next day food poison like symptoms sound celiac-ish?

2. Are there other wheat intolerances other than celiacs that might do the same?

3. I recently read up on a connection between celiac & stroke ... is there anyone here on the forum w/ this experience?

My daughter who had a a typical stroke also has episodes that resemble TIAs, but might be seizures or migraines. I have a brother that also has seizures and recently began having similar episodes and he too doe snot know if they are TIAs or seizures.

4. Any connection between celiac & mito dysfunction?

5. RE: testing and finding a physician, do I really need to find a gastro that understands celiacs or will any GI due in terms of doing the actual test?

Thanks,

Jen

Hi, Jen and welcome. I'm sorry to hear about all your daughter's problems. That sounds so rough. You know, you might wonder about the crackers but if you hadn't found something you could keep down you might have lost her entirely. You can't second-guess that sort of thing.

1. As far as gluten symptoms, some folks react right away, while others get a slower reaction. Your gluten reaction sounds a LOT like mine. I tell the difference between gluten and food poisoning/stomach flu because I get canker sores and anxiety with the gluten on top of the GI stuff.

2. A true allergy tends to be faster. It's not clear that all wheat intolerance is celiac though. Both the gliadin peptide and wheat germ agglutinin may have effects on the immune system.

3 & 4. Nothing I've personally run across but maybe someone else has info.

5. The actual celiac blood tests are straightforward as long as you're eating a "normal" amount of wheat. You cannot be tested for celiac if you're on a gluten-free diet. For a biopsy, someone who is experienced with celiac might do a better job.

[Marz]

Hi there and welcome

Sounds like you had a rough time with your pregnancy, so sorry to hear about your daughters issues, but I agree with Skylark - you shouldn't second guess yourself. No way to change the past, only improve on the future.

It wasn't clear by your post, but I'm guessing you are aware that celiac's disease is an autoimmune reaction to gluten - this is found in wheat, rye, and barley (including some traces in grain derivatives, like barley malt, wheat starch etc). If you want to keep yourself and your daughter on a strictly gluten free diet you need to avoid all these grains.

Oats is a controversial subject - some very sensitive celiacs can be affected badly by oats, others are not affected at all. To be safe, also avoid oats for a while until you're feeling better. Apologies if you're already aware of this, just by what you said, you sounded surprised that it was the wheat/rye/oat combination, when that's a very clear-cut indication of gluten intolerance

All the best with the testing and getting to the root of your problem! I'd definately recommend looking around for a celiac-aware GI, most GI's will be aware of celiac disease, but their "threshold of suspicion" is very low (or high?). Basically, unless you're a stick insect from weight loss, having diarrea constantly, and are aneamic/have osteoperosis, they'll pretty much diagnose you with IBS and send you on your way. You need to insist on getting tested for celiac, and ensure the latest blood tests are done (Anti-transglutaminase (tTG) and Anti-endomysium is apparently the best as far as I'm aware. Anti-gliadin IgA can be false negative a lot of the time, especially if you have low IgA levels already.)

Hope this info helps, and good luck

[jjb1234]

Thanks for your replies.

Don't get me wrong, I am not necessarily blaming myself for my daughters stroke if there is celiacs ... just thinking of it as a possible clue.

Yes, I am aware it is an autoimmune condition.

I know it would be easy enough for me to become symptom free and avoid triggers.

I am very interested though in understanding celiacs more and will try to get thorough testing.

It is not just for myself, but for my daughter too as her health issues are more complex and serious. She is completely gluten free and this has helped her. BUT ... if there is a chance of celiacs in our family ... I want to learn as much as I can about it.

I want to learn about causes. Is there only one cause ... one gene, or are there several?

I would guess that if there is celiacs in my family, it is a secondary thing.

Tomorrow I will call and sched an appt with a GI doc I have seen before.

Hopefully he will be adequate.

Thanks again,

Jen

[Skylark]

Celiac is well researched. There are two genes that show up in 99% of celiacs, HLA-DQ2 and HLA-DQ8. You can be tested for them, as can your daughter. Thing is, the remaining few celiacs do have different genes. There are three antibodies that cause trouble, anti-gliadin and two autoimmune ones, anti-TTG and anti-endomysial. Any of the three can show up in blood tests in people eating gluten and all will disappear on gluten-free diet. The autoimmune ones are more diagnostic. An estimated 20% of celiacs are "silent" and do not have positive blood tests. The "gold standard" for diagnosis is intestinal biopsy. Again, this requires consuming "normal" amounts of gluten to see the damage.

Gluten intolerance is not so well understood, nor are neurological forms of celiac. Some people seem to be DQ2 or DQ8 folks who haven't fully developed celiac disease. Others have different genes, and researchers have found different autoantibodies. There is an autoimmune skin rash too, called dermatitis herpetiformis. The confusing thing is it's not clear whether all gluten intolerance is autoimmune, as there are people with negatives on all the current "celiac" tests who cannot tolerate gluten at all. Nobody knows whether we're looking for the wrong antibodies, or whether gluten can have other effects on the immune system.

Good luck with the doctor.

[jjb1234]

Skylark,

RE: mito, have you ever been tested for this? I ask because they are finding mito dysfunction as being a possible cause for bi-polar in some. Hashimoto's I think also can be mito related. There also seems to be overlap among mito & celiac pts

RE: wheat intolerance possibly not being celiacs ... I am wondering about this too

When my health really started to decline as a young adult and trad meds failed, I went on the macrobiotic diet. My health improved nearly 100% All inflammatory issues normalized, fevers would stop etc. On the diet I was able to eat seitan which is wheat gluten without a problem. SO I have wondered if there is another component of wheat I am senstive to OR ... if I am only sensitive to gluten when the rest on my diet is not so great .... such as when i am eating processed foods and so forth.

I have the same type fo thing with the more typical allergies (rhinitis/hayfever stuff)

When my diet is good, I have no allergic symptoms, when my diet is not so good, I am allergic to all of the usual environmental allergens.

2. A true allergy tends to be faster. It's not clear that all wheat intolerance is celiac though. Both the gliadin peptide and wheat germ agglutinin may have effects on the immune system.

3 & 4. Nothing I've personally run across but maybe someone else has info.

[Skylark]

It's funny. I switched psychiatrists close to when I stopped needing meds. He told me that my bipolar episodes were almost certainly caused by the SSRI antidepressants. I was on Prozac for many years before my first manic episode so it fits. I don't think I have any other signs of mito problems. The Hashimoto's is so strongly associated with celiac that I'm guessing it's not mito-related but rather because I ate wheat for so long.

If you're celiac, you won't be sensitive to gluten only at certain times. As far as processed foods, you're probably running across something you're mildly allergic to. It could even be a reaction to GMO foods. I'm a little afraid of them to be honest. My allergist described allergies as a cup. Each allergen you run across fills it a little, and when it overflows you get symptoms. Food allergies can contribute to filling the cup so you react more strongly to pollen and environmental allergens. I don't know about the seitan, though pregnancy can be a celiac trigger so you might not eat it so well now!