New Member... In So Much Pain...

[krumbling]

After reading through some of the forums and postings I have realized that I have more symptoms of Celiac Disease than I ever thought before. The worst is the pain. M.D.'s (medical docotors) say it's acid reflux, but I can't believe that THIS horrible pain is from too much stomach acid, or even acid getting into my esophagus. It doesn't burn, it aches (and not in my esophagus). Can anyone help me determine if these are all symptoms of Celiac? I also have been to N.D.'s and first I was taken off sugar by one, then sugar and dairy by another, then I was told by Immuno Labs that I have +1 allergies to wheat, cow and goat milk/cheese, yeast (brewer's and baker's), oat, garlic, eggs, kidney & lima beans. By the time I had those tests I had already taken myself off of the dairy and wheat and was already considering oat and eggs.

Symptoms (a lot of which have been on and off for years):

-type 1 diabetes 23 years 6.6 A1c (good control)

-stomach & chest pain/pressure

-blisers that itch (M.D. said acne) on back, chest, upper arms, scalp & neck & face/chin/forehead

-sore throat (aches)

-sneezing

-dry eyes

-depression

-anxiety

-irritability/mood swings

-hard to fall asleep

-tired all the time, lack of motivation

-brittle nails, hair

-itchy skin (especially at bedtime)

-diarrhea

-constipation

-gas/bloating

-swollen glands/lymph nodes in throat and groin area

-skin itches horribly when hiking, running, biking

-Dh like symptoms & herpes diagnosis as "cold sore type strand"

-canquer sores

-itchy inner ears

-sharp stomach pain

-infrequent/irregular periods (start out normal but last only 4 days with light flow)

-cramps that make me double over

-ovarian "cyst"

-low blood pressure, light headedness, dizziness

I am currently taking 40mg Nexium before breakfast and dinner. I don't want to take this anymore. My husband and I want to get pregnant. I'm also taking Metocloramide or something like that (for stomach emptying).

Diet (after taking anything out that seemed to hurt my stomach this is what's left):

Coffee (does not hurt me)

Soy milk

Tofu

Tamari

Onions

Tomatoes (mostly cooked or Annie's ketchup)

Beef, Pork, Fish, Poultry

Potatoes

Gluten-Free waffles, cereal, pasta, bread (corn/rice based)

LARABARS (dates based)

soygurt

cooked veggies

cane sugar or raw sugar

fruit juice (100%)

fruit

I still eat garlic but that doesn't make my stomach hurt just gives me a sore throat (I think)

I was eating rice but that usually seemed to make my stomach hurt worse, maybe due to being "glutened"? Also rice milk seemed to do the same thing.

I had a celiac test done & EGD/upper endoscopy both which came back "negative" although I don't feel like the Dr did a biopsy (during the EGD) specifically looking for Celiac at the time. I have had so many tests and the most recent Dr told me that the only way they can "diagnose" celiac is for me to eat wheat for 90 days and then do a test. There's no way! I react to it immediately with pain in my stomach and the next day with diarrhea. Isn't this more than just an intolerance to wheat? It has to be. I'm so desperate now. I can't find answers that make sense or work for me. If anyone can help, or knows of a good "doctor" to see in the Seattle (or surrounding area) please help me! I don't know what I can even eat anymore. I've already lost over 25lbs without even trying. I have no energy. If you have strong advice and evidence to back it up, please please send it this way.

[betty6333]

unless you have to have a formal diagnosis for celiac, just stay gluten free and wait. if the pain is from celiac it will take up to a year of no cheating or accidental glutening and you will be fine, if you do not get better then look for something else. with negative tests you cannot "prove" you have it with out the challenge, but just go gluten free and when you feel better you will have all you really need to know .... which is whether or not it works for you. your symptoms could be celiac and they could be something else. but going gluten free will not hurt you . don't let you bmi get to low if you can because being very underweight is bad for your organs but go gluten free and be patient you will not heal overnight but if it is celiac you will heal.

best of luck

BTW congrats on your excellent a1c..... my boy has type 1 and we know how hard it can be getting it under 7. take you vitamins and trtack your fertile days for the pregnancy....

[RiceGuy]

Well, I do believe your have come to the right place for answers. The symptoms you describe certainly fit in with what many others here have experienced.

On the rice milk, avoid Rice Dream, as it is NOT gluten-free, even though the label suggests it is. If you examine the label closely, it contains a specified percentage. If the rice is white, it will by US law be fortified, and apparently some companies use gluten to make the added nutrients stick. Open Original Shared Link has a number of gluten-free rice products. But obviously if certified gluten-free rice bothers you, don't eat it.

I'd suggest a sublingual methylcobalamin (vitamin B12) supplement. This will help in many areas, including skin, hair, nails, mood, energy, sleep patterns, and much more. Do make sure the one you use is gluten-free, as well as free of any other offending ingredients. Source Naturals makes Open Original Shared Link. Take at least 3mg per day. There is no known level of overdose for B12, so take all you wish, though the human body doesn't effectively assimilate more than about 5-6mg per day, with approximately 3mg being the most effective. Other supplements which may help are B-complex, vitamin D3, magnesium, calcium, and zinc. Healthy fatty acids like coconut oil and flax oil might benefit you too, depending on your specific deficiencies. I've seen a number of posts recently about low iron levels.

If you are still in pain, and you have verified that all you consume (including supplements and meds) is gluten-free, dairy-free, and so forth, then try avoiding soy. Sometimes it helps even if you don't notice any immediate effects or have an allergy to it. Also, start a food journal, so you can track how you feel in relation to what you've eaten. Sometimes a pattern will emerge, even over the course of several days, as symptoms have been known to be delayed.

Have you checked all skin and hair care products? The itchy skin may be aggravated by soap and/or shampoo. Also check laundry soap, dryer sheets, and avoid licking postage stamps or envelopes (the glue contains gluten). If you use a toaster or toaster-oven, it needs to be one which has only been used for gluten-free bread. Toss out old wooden spoons and cutting boards - the gluten can't be reliably removed from these things. Also non-stick pans can harbor gluten in tiny scratches.

I hope this is helpful to you, and I'm sure others will chime in with great advice too.

Welcome to the board!

[Fiddle-Faddle]

I just wanted to suggest that you make sure that your tamari is wheat-free (to my knowledge, only San-J brand is, but maybe there are others), and that you get off coffee--maybe switch to green tea? Coffee is terribly acidic, and you shouldn't be drinking it anyway if you want to be pregnant.

Also, if you still have abdominal pain, your best bet is to forego--at least for now--all the gluten-free bread/waffle/cereals/pasta. This is because they are very difficult for a damaged gut to digest. Once your gut is healed (might take several months), then you can SLOWLY start to introduce those.

Fresh fruit, veggies, plain broiled chicken, meat, fish, potatoes, rice--these are your best bets.

Quite a few people here are intolerant to soy, so that might also be something you'd want to look into.

It does seem that the longer we have gone undiagnosed (and doing damage to our bodies unknowingly by eating gluten), the more food sensitivities we tend to develop, as well as other, related autoimmune conditions (like your diabetes).

Good luck!

[Legmaker72]

Just wondering if you have been tested for Ulcerative Colitis or Crohns by any chance. Alot of the symptoms you describe are also symptoms of other GI issues. IBD and IBS all have very similar symptoms.

I've been treated for IBD for many years and experienced many of the symptoms you described, and not until recently have I been trying to go gluten-free.

Just a thought.

Good luck.

[RiceGuy]

Just wondering if you have been tested for Ulcerative Colitis or Crohns by any chance. Alot of the symptoms you describe are also symptoms of other GI issues. IBD and IBS all have very similar symptoms.

I've been treated for IBD for many years and experienced many of the symptoms you described, and not until recently have I been trying to go gluten-free.

Just a thought.

Good luck.

Irritable bowel is often a symptom of Celiac, and it is never a disease in and of itself. Colitis and Crohn's are known to be caused by Celiac as well, as is Diabetes. Add to that the fact that doctors don't know the causes of these things, and only treat symptoms. A number of members of this board have had such conditions clear completely on a gluten-free diet.

[mftnchn]

I'm with RiceGuy...and agree with what he said.

If you are willing to come to Portland, send me a PM and I can give you a doctor's name, an internist who specializes in celiac. I'm a new patient, but so far what I hear sounds good.

How long have you been off gluten? If a year or less, you could do Enterolab testing yourself, and could test for celiac genes too. Could help with a piece of the diagnostic puzzle.

One more thing, if you are celiac, and it sounds like a strong possibility, you may have profound malabsorption. So it would be good to find a doctor who will check for that and help you get the supplements you need.

]

With a damaged gut from celiac we are also prone to other intestinal infections like yeast and parasites, so that's another thing to check if things don't clear up, plus getting on a really good probiotic can help.

There are some other Seattle folks on the forum, you might try another post and ask specifically in the post title for doctors in Seattle to make sure they see the post.

Hope you soon feel better.

[Nancym]

You might want to look into a paleo sort of diet. Very simple food like veggies, fruit, meats. None of this processed nonsense that always seems to get us into trouble.

I've found a number of other sensitivities on my own by creating a "basic diet" (meat, veggies, a little fruit) then adding in suspected foods. I've found that nuts and seeds, dairy are all problems for me. I have a few more to check out like chocolate and coconut.

A lot of people have problems with soy. So far, knock wood, I'm ok on that.

Anyway, stick to the diet (gluten-free/CF) and learn all you can!

[Rachel--24]

Hi,

As others have mentioned you cant get an official diagnosis of Celiac Disease without getting back on gluten for at least 3 months before retesting. There is still no guarantee that you will test positive even after all of the suffering.

I actually had every symptom on your list (plus many more) with the exception of diabetes and herpes...however, I do not have Celiac Disease.

In my case most of the symptoms were/are caused by dysbiosis (imbalance of good/bad bacteria in the gut)..... particularly yeast overgrowth.

Alot of your symptoms can be caused by yeast so if the gluten-free diet doesnt clear everything up...I would look into other things. Also, if you continue to develop food sensitivities after remaining gluten free....this would be indicative of yeast/leaky gut issues.