14th Day Back On Gluten

[Gerri]

Day 14 (July 20, 2008)

- Swelling in hand still bad

- Rash on face, arms and legs, also increase in psoriasis.

- Asthma- taking inhalers especially at night

- Insomnia and sleep apnea actually not bad - wrapped myself in pillows so I can

[jerseyangel]

Hi Gerri,

Gawd--I'm sorry you're having to go through this

Hang in there!

[nikky]

Hi

poor you! i hope your biopsy is soon so you can stop eating gluten.

feel better hun.

[cruelshoes]

I hope you get the answers you are looking for after going through all of this. Although, no matter what the tests say, I think you have some pretty compelling evidence to give up gluten.

Hang in there.

[veggienft]

Why would anyone do this voluntarily?

The test may or may not show whether you get sick when you eat gluten.

And you don't know the answer?

..

[Ursa Major]

And you are seriously going to keep eating gluten until September 4th? If you keep getting worse until then, who knows what will happen.

It might be a good idea to call your doctor, and let him know how sick you are getting on this gluten challenge. Since you were off gluten for only three weeks, you may ask to either get a sooner appointment for the biopsy (which will likely still be accurate, villi don't heal that fast), or you may have to stop eating gluten because you are getting too ill to function.

[Katsby]

I agree to call the Dr. asap and tell him/her what you're going through. Even after going back on gluten there's no guarantee that your biopsy will be positive unfortunately even if you do have Celiac.

[TammyK]

We are with you Gerri! (Meaning, me and my daughter because we are getting ready to do the same).

Next week I start reintroducing gluten back into my 11 yr old daughter's diet. I know how you feel! I absolutely am NOT looking forward to it. When eating gluten she has 5-7 seizures and migraines a day and her Asthma gets out of control. (Not to mention the horrible psorasis and ruddy-red face rash). It makes her very weak and washed out. Our neuro has asked for a 24 hr. Video Monitoring and EEG on her brain. I just spent the last two months cleaning up her diet and now I have to make her sick! Seems crazy!

Oh and isn't it amazing that some people still won't believe that your symptoms can be caused by food? The proof is in the pudding!

So sorry you are miserable. Hopefully, it will be worth it in the end.

Miserable together!

[gfpaperdoll]

well I am not in a great frame of mind since I just spent the day at a nursing home watching all these little old ladies eating gluten slop three times a day. Well their food might be one teeny little step above slop, but not much. I might be able to save my friend but I am afraid all the other women are doomed - & believe me a lot of them are classic celiac - osteo, diabetes, etc etc etc.

so do I think it is crazy to go back to deliberating eating gluten to almost kill yourself? well no, I do not, I think it is idiotic. I hope you do not lose your eye sight or something irreversable like that. I do know someone that it happened to.

& really what are you going to do once you get a negative biopsy? continue to eat gluten?

& what are you going to do if it is positive? go gluten-free & do another trial in three years?

[veggienft]

Okay .....deep cleansing breaths.

It's apparent that many people who get sick from gluten can't get away with cutting it out of their diets.

To you people, my heartfelt condolences. I hope, after proving that gluten gives you a recognized, named disease, you can get away with cutting out gluten. It seems like the skeptics in your lives, if they cared about you, would have enough compassion to capitulate after they see you in agony, or wretching your guts out.

I have words for them, but can't use them here.

Good luck.

For the people needlessly suffering so a doctor will agree that you're sick.....

Tombstone inscription: "I told you I was sick."

[Ursa Major]

Next week I start reintroducing gluten back into my 11 yr old daughter's diet. I know how you feel! I absolutely am NOT looking forward to it. When eating gluten she has 5-7 seizures and migraines a day and her Asthma gets out of control. (Not to mention the horrible psorasis and ruddy-red face rash). It makes her very weak and washed out. Our neuro has asked for a 24 hr. Video Monitoring and EEG on her brain. I just spent the last two months cleaning up her diet and now I have to make her sick! Seems crazy!

Are you serious about wanting your daughter to eat gluten just to prove your point? It sounds like it could possibly kill her. If that was my kid, no way would I take the risk! Her reactions sound more like a severe allergic reaction, possibly as well as celiac disease.

[ravenwoodglass]

We are with you Gerri! (Meaning, me and my daughter because we are getting ready to do the same).

Next week I start reintroducing gluten back into my 11 yr old daughter's diet. I know how you feel! I absolutely am NOT looking forward to it. When eating gluten she has 5-7 seizures and migraines a day and her Asthma gets out of control. (Not to mention the horrible psorasis and ruddy-red face rash). It makes her very weak and washed out. Our neuro has asked for a 24 hr. Video Monitoring and EEG on her brain. I just spent the last two months cleaning up her diet and now I have to make her sick! Seems crazy!

Oh and isn't it amazing that some people still won't believe that your symptoms can be caused by food? The proof is in the pudding!

So sorry you are miserable. Hopefully, it will be worth it in the end.

Miserable together!

Before you do this to your child I would ask the doctor just what he is trying to accomplish. It sounds like he is making her test subject. He isn't in the process of writing some paper is he? The choice is yours but I would never take that risk with her. One thing I would agree to would be an MRI scan of her brain. Often white lesions can be seen that look similar to demylinating lesions but in different areas. These white spots, know as UBOs, unidentified bright objects are diagnostic of neuro impact celiac in many other countries. That test can be done without making her sick to do so. IMHO your doctor is taking a big risk with your child, I would want to know exactly what he hopes to prove other than what you have already seen as obvious. Also her gluten-free statis is not going to impact testing for any other condition. Nor will it mask symptoms of anything.

[TammyK]

Ravenwood glass, & Ursa Major,

Thank you for your concern, I have struggled and struggled with this myself. I want to asure you that the seizures are mild, coming and going quickly. The doc is concerned about what is seizure and what is migraine. Since they are mild, the two can look the same. (However, having 5-7 a day is nothing but mild). He has refused to treat until this 24 hr test (which includes two staff members on duty and her dad and I) is done. With such positive results with eating gluten-free, I don't plan to treat her unless matters get worse. I am following docs orders in case I will need his perscription pad down the road. It takes 5 months to get into see him! My M.D. just passed me onto the big city. I nearly have canceled this appt. many times but after she had a seizure last Friday and she hasn't had any gluten to my knowledge, I then felt better about it. Seizures are nothing to mess with and I don't feel capable of handling it totally on my own.

Regarding rather it's an allergic reaction, my daughter did test for wheat allergy years ago. Yesterday and today I gave her some barely to isolate the gluten from the wheat to see what would happen. (Advice from this forum). No reaction so far! Now I am really wondering if it actually the wheat instead of gluten. I had been feeding her spelt for about 4 years and all a sudden she started having seizures! Since going off Spelt, her Asthma has improved as well. Funny thing, when I said to her, "Isn't it great you haven't reacted to the barely yet?" my daughter responds, "Mommy, please don't put me back on gluten!!!" She actually *loves* her gluten-free diet because it is a tasty improvement to spelt products. Plus, she knows how much better she feels. Isolating the gluten was done in order to help me decide if I think she may be Celiac. Knowing rather it is a gluten intolerance,celiac or an allergy has been driving me nuts.

Thank you for your posts.

[Fiddle-Faddle]

Whether it is an allergy to wheat or a problem with gluten, either way, spelt isn't going to help--it IS a form of wheat.

I must say, I do agree with Ursa. I think you are taking a terrible risk. Even mild seizures can cause brain damage.

I am continually astounded at the number of doctors who ignore the their sworn mandate to "first do no harm."

[ShayFL]

I would worry about stroke......

[tom]

Whether it is an allergy to wheat or a problem with gluten, either way, spelt isn't going to help--it IS a form of wheat.

I'm pretty sure that there are many w/ a straightforward wheat allergy, who don't react to spelt.

Not that it does US any good.

I am continually astounded at the number of doctors who ignore the their sworn mandate to "first do no harm."

I looked this up once - it's not actually part of the Hippocratic Oath, tho things like "not using a knife on a patient" are. Besides disallowing any & all surgery, an argument was made that hypodermic needles also violated this edict.

[Fiddle-Faddle]

"First do no harm: Slogan used in medicine often in the Latin wording "primum non nocere," a fundamental medical precept of Hippocrates (ca. 460-ca. 377 B.C)."

from www. MedicineNet.com

"Wheat allergy occurs when there is an allergic reaction to gluten (the protein found in wheat, rye, barley and oats).

What About SPELT?

Spelt is an ancient grain related to wheat that was used as a staple food in early Europe. However spelt is now being cultivated again. It is more nutritious than wheat, but still contains gluten (a protein found in wheat.) "

from www.foodallergyintitiative.org

[tipnpat]

I too am considering ingesting gluten again in order to get a "real world," diagnosis. I say that with sarcasm. But, the truth is is that I live in the real world. I had positive test results with enterolab and I've had an overwhelming response to a gluten-free diet. I'm not the person I was a year ago and I like this one much better. My kids recently went through the testing and came up negative but all the doc did was ttg-IgA and total IgA. What about EMA? He said it was a waste of time. Maybe, but I like to have all the numbers regardless. So, their ttg-IgA's were 0 which is good. I'm glad but I still think my one son is definitely developing it. His enterolab stuff came back just above the cut-offs. It just isn't showing in his blood yet. I bet it will next year. His Vit D was super low which I've read happens with auto-immune disease but of course the doctor wants to supplement it which I've also read can make the auto-immune condition worse.

Anyway, back to me. I was sure one of them would be celiac and then with my mother being celiac, it would be a more definite answer for me. Now, I feel like maybe I need more proof and I'm second-guessing myself. I'm just not comfortable telling people, even my husband, I have something I don't know for sure I have. The pediatric GI said I should at least get a yearly ttg-IgA to make sure the diet is working. He of course didn't like that I had gone gluten free without knowing for sure but said I should do yearly blood work anyway.

So, I started weaning off of gluten last year around August or September. I didn't get fully off until around November. I've had bouts of cheating where I second-guessed myself and said I was a hypochondriac, or that I wanted to see what happened if I ate it. So, I've had some contamination. I started eating gluten last night and I'm dreading it. Do you guys think that if I eat gluten until August 18th, it will be enough. I know nobody can really answer this as everyone is different. I'm just unsure what to do.

[tipnpat]

There was another question I forgot to include. I know many doctors won't accept enterolab results but so Dr. Fine isn't published... where else would the ttg-IgA and AGA-IgA come from? What else would cause the body to make it - blood or stool? Are there other conditions that make those go up? I'm sure there are. I just don't know what they are.

[ravenwoodglass]

Ravenwood glass, & Ursa Major,

Thank you for your concern, I have struggled and struggled with this myself. I want to asure you that the seizures are mild, coming and going quickly. The doc is concerned about what is seizure and what is migraine. Since they are mild, the two can look the same. (However, having 5-7 a day is nothing but mild). He has refused to treat until this 24 hr test (which includes two staff members on duty and her dad and I) is done. With such positive results with eating gluten-free, I don't plan to treat her unless matters get worse. I am following docs orders in case I will need his perscription pad down the road. It takes 5 months to get into see him! My M.D. just passed me onto the big city. I nearly have canceled this appt. many times but after she had a seizure last Friday and she hasn't had any gluten to my knowledge, I then felt better about it. Seizures are nothing to mess with and I don't feel capable of handling it totally on my own.

Regarding rather it's an allergic reaction, my daughter did test for wheat allergy years ago. Yesterday and today I gave her some barely to isolate the gluten from the wheat to see what would happen. (Advice from this forum). No reaction so far! Now I am really wondering if it actually the wheat instead of gluten. I had been feeding her spelt for about 4 years and all a sudden she started having seizures! Since going off Spelt, her Asthma has improved as well. Funny thing, when I said to her, "Isn't it great you haven't reacted to the barely yet?" my daughter responds, "Mommy, please don't put me back on gluten!!!" She actually *loves* her gluten-free diet because it is a tasty improvement to spelt products. Plus, she knows how much better she feels. Isolating the gluten was done in order to help me decide if I think she may be Celiac. Knowing rather it is a gluten intolerance,celiac or an allergy has been driving me nuts.

Thank you for your posts.

First off it really doesn't matter whether they deem her gluten intolerant or celiac, gluten is still poison to her. If she has the neuro toxic impact more than GI impact at this point she may not get the celiac label but that won't mean that it definately is not in her future. I suffered from neuro impact from the age of four. I reached a point before diagnosis where one of the worst of the neuro issues is past the point of healing. I had neuro symptoms for over 25 years before any GI stuff was recognized as being anything more than normal fuction. Many of us see our migraines totally disappear gluten free. I lived with them almost daily for years, even when the headache wasn't present the migraine auras were.

I totally understand your wanting to know but please when you are done with all the testing YOU choose to put her through get her back on the diet. When we have neuro impact it takes a very small amount to start the symptoms and it can take a long time to ferret out all possible sources of CC. That may have been the reason for the seizure.

How long are thay planning to have her eat gluten? Is it going to be a short term challenge, as in only until she reacts? GI doctors often want a 3 month challenge before testing, hopefully the doctor is sending you home from the appointment with the monitors you need so that as soon as you are done with the test you can be done with the gluten.

You also mention that you gave her barley and she hasn't reacted yet, be aware that it may take as long as 3 to 5 days before you see the reaction, one of the reasons why it can be so difficult for us to figure out what 'got' us. One thing that is seen with barley more often than other gluten sources is an 'odd' taste in the mouth. Many of us will get a metallic taste from it so ask her if she is having this effect.

If she seems clumsy or off balance a lot she may be affected by ataxia. Many children that have this hit at a young age don't realize that it is not just the way they are and may not even mention it. Watch her and see if she is doing some of the behaviors that compensate for this. For example, does she tend to walk next to stuff, does she often touch her hand lightly to objects when passing, we often can reestablish balance with just a touch to something outside the body even if it is something that does not give support. Does she stumble a great deal? Does she watch her feet more than most children? These can be signs that she is being effected by gluten ataxia. If she has ataxia with the migraines and the petit mal seizures I would be very surprised if she is not effected by gluten. Also if she has ataxia there is a good chance those UBOs will show up on an MRI, I would ask the doctor to do the MRI first and then decide after the results are in whether the gluten injestion is even needed. You may want to google 'unidentified bright objects and gluten' and UBO and celiac so you can print out and take the material from a peer reviewed source like Lancet, PubMed or the NIH that will educate the neuro to this as many in the US have no idea that celiac can have a neuro presentation. I was on countless useless meds for years with my neuro symptoms progressing to the point where they thought I had MS after my MRI because my neuro didn't have a clue. In the end after diagnosis almost all neuro features resoved and I even regained reflexes but the ataxia was too long standing to resolve completely.

I hope everything goes well at the appointment and that you finally get some answers. She is at an age where puberty will hit soon and for those of us with neuro impact the hormones actions combining with the antibodies in our brains can lead to depressive symptoms and interfere more with learning and social behaviors.

[ravenwoodglass]

I too am considering ingesting gluten again in order to get a "real world," diagnosis. I say that with sarcasm. But, the truth is is that I live in the real world. I had positive test results with enterolab and I've had an overwhelming response to a gluten-free diet. I'm not the person I was a year ago and I like this one much better.

I bolded the most important part of your post. You have done the most reliable test there is. You went gluten-free and you saw an "overwhelming response" for the better. That is diagnostic.

[Fiddle-Faddle]

I agree with Ravenwoodglass.

An overwhelming response to a gluten-free diet is a far more accurate diagnosis than any blood test or biopsy.

I honestly can't understand why anyone would feel they need to get official approval from a doctor when the tests the doctor offers are less accurate than an overwhelming response to a gluten-free diet.

If a child has an obvious reaction to peanuts, no doctor on earth would say, "let's feed him peanuts, and only call him allergic if he has an anaphylactic reaction."

If it were rat poison instead of gluten, would you still need testing to confirm that your body can't handle it?

[cruelshoes]

There was another question I forgot to include. I know many doctors won't accept enterolab results but so Dr. Fine isn't published... where else would the ttg-IgA and AGA-IgA come from? What else would cause the body to make it - blood or stool? Are there other conditions that make those go up? I'm sure there are. I just don't know what they are.

Here is some information that may be of use to you regarding the other conditions that produce TtG and AGA antibodies. Apologies to the ooriginal poster for the brief threadjack.

Open Original Shared Link

It is important to note that some people with Type 1 Diabetes, Hashimoto

[TammyK]

Whether it is an allergy to wheat or a problem with gluten, either way, spelt isn't going to help--it IS a form of wheat.I must say, I do agree with Ursa. I think you are taking a terrible risk. Even mild seizures can cause brain damage.I am continually astounded at the number of doctors who ignore the their sworn mandate to "first do no harm."

Fiddle-Faddle~

I have NOT heard this; that even mild seizures can cause brain damage. In fact, I have heard that denied. I read a stack of books on epilepsy and gobs of time on the Internet and have not run into this. I will be asking the doc about that! And, how would she be at risk of stroke?

Think I will take this very cautiously. I was going to start giving it to her a week beforehand but think we will start the night before instead.

I am not totally down on the medical profession yet, as some are on this forum. I see a naturopath and have seen her for this but she cannot help us with the seriousness of this.

Thanks for everyone's concerns and warnings.

[tipnpat]

I have NOT heard this; that even mild seizures can cause brain damage. In fact, I have heard that denied. I read a stack of books on epilepsy and gobs of time on the Internet and have not run into this. I will be asking the doc about that! And, how would she be at risk of stroke?

TammyK,

The risk of stroke comes because sometimes, not all of the time, seizures involve vasospasm and can sometimes lead to a brain bleed. It's slightly different from stroke as stroke is usually caused by a blockage the way a blockage causes heart attacks. I work in obstetrics and in eclamptic (toxemia is the old term) patients their elevated blood pressures lead to vasospasm and then seizures. I have seen several patients have brain bleeds after several grand mal seizures. My expertise on this is limited as I can't quote specific sources. I only have my nursing training and experience to speak from.

Tip